Categories
Definitions & Characteristics

Atmosphere – Snowflakes (Part 2)

[…] 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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Categories
Definitions & Characteristics

Stories Analogies

Extra section related to:

Sparrows and penguins

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Writing and speech

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A dog’s new kitten

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Thinking about autism & philosophical models – Poems: Moonstruck, Breath, Monster, Frog Prince

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Categories
Spotlight

Truth Beacon – Research & Authority

[N]o matter what you do in the disability community, you will ruffle feathers just because it’s such a huge community, and it’s heterogeneous. It’s full of very different opinions and backgrounds because disability affects everyone and anyone in any culture. So there’s gonna be, of course, dissent and disagreement.

Caitlin Wood

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[O]ne of the biggest dangers that the culture of the autistic community faces is the allure of a single story told from within.

chavisory

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To be an autistic in a minority culture is to realise that we are not all standing on the same ground when it comes to our experiences as autistics.

Dream Walden

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But autism researchers are not geologists, to paraphrase @aneeman. We’re not rocks. We talk back. If autism researchers don’t want to work with people, they should study something else.

Sara Luterman

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Both [the personal experience and the scientific literature] provide insights. But these insights are qualitatively different, and no universal standard sets one above the other.

William Mandy

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The four kingdoms [Illness, Identity, Injury, Insight] may not capture the entire universe of the autism spectrum, but they describe largely non-overlapping perspectives that now divide the world of autism.

Thomas Insel

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No one autism story takes every single perspective into account. […]

Many of the perspectives conflict […] and there are just so many that it’s nearly impossible to remember to include them all.

Stuart Duncan

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[T]here are, I think, many versions of disability pride

Susan Wendell

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We don’t all agree. You don’t have to agree with all of us. You can’t possibly agree with all of us anyway. A lot of times people embroiled in identity politics get really wrapped up in the idea that the oppressed person is always right about their oppression. That’s bullshit. We can be as wrong as anyone.

However, we have on average thought more deeply and for longer about our oppression than other people have, so you can benefit from our experience when dealing with the way your own oppression takes the same shape as ours.

You can learn a lot more about ableism by looking into what disabled people have already figured out about it

Mel Baggs

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…the erroneous presupposition that observation of human performance is an exact science, that performance is evidence of ability, or simply is ability.

Idea and keywords by C.F. Goodey

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[A]utism research […] a mix of insights and insults.

PredictionError

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In non-autism areas, poor quality research and its harms – its waste of resources, its misleading findings – are vigorously condemned. There is recognition that even the best existing research standards are flawed and need always to be improved.

But when it comes to autism, standards have instead been lowered or discarded to accommodate the extremely poor autism intervention literature.

Poor standards in intervention research are seen not as harmful and wasteful, which they are, but as what autistics need and deserve. Resources have poured not into improving these abysmal standards, but into making the very poor quality autism intervention literature more powerful and influential.

Michelle Dawson

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In the same series:

Categories
Spectrum

Lines – Glass (Part 3)

Typically developing babies are reducing their attention to faces and increasing their attention to objects, [and] their social development […] soars. Moreover, rather than distracting babies from social engagement, objects and the hands that manipulate them offer new ways to share attention with others.

Emily Morson

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It is a lot of work to look non-autistic, and yet, looking non-autistic is the ticket to sit at many tables. It is not right, and yet, I choose to expend a great deal of energy inhibiting my autistic ways for the sake of sitting at some of society’s tables. Employment is one such table. […]

Many argue that all people have to do this ‘sucking it up’ to some extent. After all, we cannot just act however we wish when we are in public. I agree.

However, autistics have to do this to such a greater extent that it prohibits many of us from being employed because we simply cannot ‘suck it up’ long enough each day to be gainfully employed.

Judy Endow

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It’s Stressful to be Someone You’re Not

Faking it ‘til you make it may work in the short-term, but trying to sustain it in the long-term is unbelievably stressful. We all have our preferred ways of doing things. And because those ways are normal for us, they require the least amount of energy. We can do them without burning out or disappearing from ourselves in the process.

Faking it is supposed to magically smooth away our feelings of self-doubt and low confidence, but in reality it puts extra stress on the body. People who continuously act a pretense, outside their natural personality preferences, at some point will start to feel anxious, exhausted, angry and plain-old frustrated. It’s a bit like pulling the plug in a bathtub; you won’t notice much difference in the water level at first, but eventually everything will just drain out.  

Jayne Thompson

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We are all, every day, engaged in mind-blindness against people we do not agree with or comprehend. We are all unempathic about some people and some groups, […] toward people who are not like us.

Karla McLaren

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How many ‘normal’ people have enough human feeling to befriend and understand non-normative people? How many ‘normal’ people are trapped in their own ‘normal’ worlds, without any consciousness of what it means to be non-normative? The accusations of lack of caring and lack of engagement adhere to the ones who are different. Those in the majority are simply acting ‘normally’ by doing all the things that, when non-normative people do them, are considered evidence of pathology.

Rachel Cohen-Rottenberg

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What’s it like to be neurotypical? […]

It’s being able to fidget without it being called some specialized term which sounds like a euphemism for fidgeting with one’s own unmentionables, have a passionate interest without it being called a ‘perseveration,’ participate in classes and activities without them being called ‘therapies,’ and appreciate the small beautiful things in life without being accused of being unable to see the big picture. […]

It’s living in your own little world just as much as any autistic does, without people making a big deal out of it.

reform_normal

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Some people get labeled because of their disability.

For example:

  • Sheila does not have a disability. Sheila has a bad day. She yells at her sister. People say, “Sheila was being mean today.”
  • Renee has a disability. Renee has a bad day. She yells at her sister. People say, “Renee is aggressive.”

Autistic Self Advocacy Network

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Both satire and very serious

Managing Challenging Behaviors in Neurotypicals

Many neurotypical adults have behaviors that the rest of us find difficult to handle. These people are generally unaware of the stress their challenging behaviors cause for autistic friends and family members. Even the most patient autistic people whose loved ones have challenging behaviors may become frustrated and find their time and energy greatly taxed by the demands of dealing with these behaviors regularly. […]

Restless Hands

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How do we respond to discomfort? To fear?

Let’s look first to film and literary clichés for examples…

We grit our teeth and bear it. We ball our fists and dig our nails into our palms. We bite our tongues to keep from screaming. We pinch ourselves. […]

What do all these methods have in common? They all involve the distraction of pain as a coping mechanism. […]

There’s a reason pain is the universal distractor. Pain is the only form of stimulation that our nervous systems will not acclimate to.

Kirsten Lindsmith

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Sometimes, all of us have meltdowns. Not slight upsets, or moments of rage. Full blown, life sucks meltdowns. If you don’t carry an autism label and you don’t harm yourself or others while having them, they remain private moments of vented frustration one may or may not be ashamed of.

Kerima Çevik

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We must accept that it is a normal behavioural response to having our needs unacknowledged and unmet to lash out aggressively, to engage in attention seeking, and to do things others find annoying. Any of us would do that (and do) if put under enough pressure and if we feel unvalued and unheard.

Michelle Swan

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[…] The most dangerous assumption, meanwhile, is that they don’t understand. Their eyes are not windows to any sort of soul. They are people in form but not in substance. Their communications are disregarded as meaningless or rudimentary. Imagine if, all along, a person treated this way understood absolutely everything they were told, understood that people underestimated not only their cognitive abilities but their very humanity, understood that they were seen as less than, damaged, or not even there. Imagine the danger to a soul viewed as soulless.

Imagine how you would feel in that person’s place. Would you feel angry? Would you want to scream? Would you lash out sometimes? Can you imagine something like an inner struggle to express rage without hurting other people that might lead you to self-harm?

The desire to be seen is perhaps the strongest craving in a human being. […] I don’t mean seen literally with the eyes, or heard with the ears, but to be beheld by a fellow human by any means available. To know that you have managed to convey something of your unique self to another person both roots you to the world and frees you.

Erin Human

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Followed by the series: