Atmosphere – Silhouette (Part 3)

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In her 2005 book Constructing Autism, Majia Nadesan provides a useful but woefully under-recognized definition of autism.

She writes that autism is “a nominal category useful for grouping heterogenous people all sharing communication practices deviating significantly from the expectations of normalcy.”

In simpler terms: autism is a label for people whose social behavior is very different from what their culture expects. […]

Autism does not reside a priori within my body.

Autism is an idea, a social category. Autism is the meaning that we project onto certain modes of behavior. It is made up of society’s collective anxieties around what it means to be ‘normal,’ to be fully human.

There is still a stubborn essentialism that pervades the entire discourse around autism […]

Caroline Narby

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Autism is not a thing. It’s an abstraction.

The only concrete reality is the existence of the people who get called autistic.

So when I say what autism is, I mean how my particular brain, that is called autistic, works.

Amanda Baggs

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I think that my ‘story,’ though intensely personal, is not at all singular.

Beneath its idiosyncrasies lie vast strata of commonality, communality

Out of context, N. Mairs

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For many years, ‘autism’ and ‘autistic’ were also used descriptively: […] autistic disorder is a disorder characterised by autistic features, ‘autistic’ being an adjective that describes behaviour

Since 1979, a different use of the word ‘autism’ has crept into general use, and even into specialized use.

It’s now used to refer to an underlying medical condition that is assumed to cause autistic behaviour.

Why does that matter? It matters because what has also crept in is the assumption that if people meet the diagnostic criteria for [autism], that means they have the underlying medical condition that causes autistic behaviour – that everybody’s autistic characteristics must have the same cause.

Sue Gerrard

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A lot of autism research begins with the premise that even though there are [over a thousand] different ways of getting an autism diagnosis, being in the autism ‘gang’ makes you (a) fundamentally similar to all the other gang members and (b) fundamentally different to everyone that doesn’t make the grade. That’s a big, big assumption.

Jon Brock

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We acknowledge the heterogeneity within autism, but our intuitions still drive us to seek a common essence of autism.

The essentialist view of autism goes hand in hand with the way autism research is conducted and reported. […]

By always beginning with autism and working backwards, we have invested too much significance in the label itself.

Jon Brock

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Critics […] pointed out the circularity in Spearman’s argument.

Intelligence tests were assumed to measure intelligence, but because no one knew what intelligence actually was, the tests also defined intelligence – even if they varied considerably.

logicalincrementalism

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No true Scotsman / Appeal to purity

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[T]here is no consistent underlying ‘essence’ to those ways of being we now classify as autistic; rather, in each case, the underlying difference is idiosyncratic and unique. […] Of course, this is not to deny that autistic cognitive and behavioral profiles tend to overlap in specific and interesting ways.

Robert Chapman

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The problem with calling {something} ‘biological’ is that biology is complicated.

Hardly anything in biology fits into […] neat categories

Partial quote, Luz Delfondo

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Just because something’s a social construction doesn’t mean it’s not real […] Now, is it based in biology? Influenced by? Completely unmoored from?

That’s a different argument, and one we can’t get to until we stop conflating it with this one.

Sam Killermann

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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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Next

Lines – Glass (Part 3)

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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:

Lines – Amber

Lines – Glass (Part 1)

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Question:

Why do some neurotypicals stim? Do they realize they are stimming?

They do. I don’t think they know they do, but they do. […]

Watch people overcome with emotion, an emotion that they can’t process, and they will stim.

Watch the news after a disaster or some horrible accident and you will see people holding their heads and rocking back in forth in grief.

Watch game shows when someone wins a big prize and look at their hands. Fingers extended, flat palms and shaking very fast in excitement.

Once you key into it, it is hard to miss.

Ben Rodda

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Kids love repetitive stuff. I used to work as a teacher assistant with 1-4th grade. Trust me with younger kids, if they like a video, they’ll see it 200 times in a row without getting bored.

LadyNoir93

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I know many adults without disabilities that enjoy child-like things like cartoons or toys. People with Intellectual and developmental disabilities are treated differently for liking the same things. It’s funny when I meet with non disabled people and they geek out over my little plushy wookies I carry as comfort items. It shows me that adults can enjoy things that children enjoy without people assuming that they are mental children.

Ivanova Smith

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The sheer amount of people who look at me and view me as ‘unresponsive’ when I’m very responsive, is impressive. And the things they do when they view me as unresponsive, seem a lot more like unresponsiveness than anything I do to them.

It’s like they only see a tiny, tiny number of the possible human responses as ‘response’. When those responses are present, even if totally fake and out of context and plastered-on to someone who’s really not all that responsive to someone, they view it as ‘responsiveness’. When those responses are not present, even if every other possible signal of response is happening, they view that as ‘unresponsiveness’. And they call us oblivious?

Mel Baggs

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I definitely know that lots of non-ASD people are terrible at judging how people with ASD are feeling.

If you just noodle around the Internet for a minute, you will find quite a lot of ASD people describing how someone thought they were nervous or sad when they were calm, bored when they were having a panic attack, uninterested in things they were actually very interested in, and so on.

In fact, sometimes police officers will harass or physically hurt people with ASD because they misinterpreted the person’s behavior.

Amanda Forest Vivian

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Hacking emphasizes that the divide between autists and non-autists is ‘symmetric.’ He attributes this divide to the fact that autistic people cannot intuit non-autists’ feelings and intentions, and vice-versa. “We are fellow humans in that we grasp each other’s intentions, feelings, and wants,” he argues. Because autists and non-autists cannot immediately grasp each other’s interiority, they see each other as alien. They do not share the “bedrock” of a common humanity, nor do they “share a form of life,” Hacking claims, borrowing two turns of phrase from Wittgenstein.

Hacking does ultimately try to gesture toward inclusion, and I do think that is laudable. However, I disagree with many of the premises of his argument, and I wholeheartedly reject the idea that autists and non-autists must be fundamentally alien to each other.

Caroline Narby

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(Why repeat lyrics?)

Seven time seven is 49. The pearl is in the river. Mr. Turkey is two times good for you. How much wood would a woodchuck chuck? I believe Fielding Melish is a traitor to his country. Badadada. Badadada.

Along with many many other stock phrases, these are integral parts of my thought process. Sometimes I say them out loud around people I am comfortable with. Each one indicates a type of thought and keeps me anchored enough in language to figure out what it is I need to say.

I suspect that NTs do this somewhat with songs, though they don’t usually respect or recognize these other forms. […]

Bev

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when I am feeling very bad, usually I’ll latch onto some song extra hard.

Noelle Stevenson

Is she NT? I don’t know.  Should it matter? It’s up to you.

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[…] folks will often assume the speech is meaningless if they know the speaker is autistic and they recognize that it’s an echo/reference. (As opposed to neurotypicals apparently being clever when they make references?)

Alyssa Hillary

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Words are but the vague shadows of the volumes we mean. Little audible links, they are, chaining together great inaudible feelings and purposes.

Out of context, Theodore Dreiser

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