Categories
Definitions & Characteristics

Atmosphere – Silhouette (Part 1)

Having an {autism}-like syndrome does not give you {autism} […] Having a big belly does not make you pregnant.

Partial quote, David Schnarch

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If the DSM-IV criteria are taken too literally, anybody in the world could qualify for Asperger’s or PDD-NOS.

Catherine Lord

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To claim that something is over-diagnosed implies that there is one true, proper rate of diagnosis.  And that ain’t so. […] For a complex, multi-faceted neurological condition such as autism, these issues are compounded much, much more.

Even for many physical conditions, doctors wrangle over how to define the boundaries of a diagnosis.

Lynne Soraya

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[The loss of the autism diagnosis] probably reveals more about the weaknesses of a definition of autism based entirely in deficits rather than in core processing differences.

chavisory

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[…] I feel like this list [written by autisticality] is too vague and open, perhaps to the point that it’s not useful. (Barnum–Forer effect)

I’m sure nearly everyone meets at least a few of these traits, and in these criteria, there is no threshold given (e.g. a number of criteria you would meet in order to be ‘maybe autistic’ or ‘autistic’) to divide between ‘autistic’ and ‘non-autistic’ people.

Differentiating between ‘autistic’ and ‘not autistic’ is difficult however you divide it, but without a line, and using these criteria, it seems like everyone would fit into being autistic.

prayingground

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[T]here is an overlap between people who end up with a diagnosis on the autism spectrum and the general population

[Here are the results of] a questionnaire that measures autistic traits in the population: on the left of the graph you see the familiar bell-shaped curve, or normal distribution, in the general population […] so it’s not that you have autism or you don’t, but that almost everyone in the population has some autistic traits and find themselves distributed somewhere on a spectrum.

On the graph you see the solid line where people have a diagnosis […] but there is that middle bracket of overlap – there isn’t a clear cut point where you can say that somebody who has a diagnosis of autism is clearly different from somebody who doesn’t so [it] reinforces the idea of individual differences in the population.

[…] although people with a diagnosis of more autistic traits there’s a substantial overlap and that actually it’s not your score on a diagnostic test that determines that you need a diagnosis, it’s actually your environment.

[T]here are people who score at exactly the same point in that grey zone in the middle and that some will have a diagnosis and some won’t and what determines that is whether you find yourself in an environment in which you can thrive and fulfil your potential – we can call it an autism-friendly environment – or if you find yourself in an environment in which the challenges are too great, and you begin to suffer and end up going to a clinic and seeking a diagnosis.

So it’s not your psychological make-up but the fit between you as an individual and your environment that determines if you end up with a diagnosis opening up the possibility that we can adapt the environment to make it easier or more difficult for people who potentially have autism to fit in.

Some will suffer in certain environments whereas others will manage because of environmental adaptations or simply a good fit between them and their environment.

Simon Baron-Cohen

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“Everyone’s a bit autistic, that’s why it’s called a spectrum.”

This is not what ‘autistic spectrum’ is meant to mean.

In fact only autistic people are on the autistic spectrum. If you’re ‘on the spectrum’ then you are autistic (or ‘have autism’, whichever is your preference), it is a spectrum of the people who are autistic.

Not autistic? Not on the spectrum.

Nat

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[A]utism is a collection of related neurological conditions that are so hard to pick apart that psychologists have stopped trying.

All autistic people are affected in one way or another in most or all of these boxes – a rainbow of traits. If you only check one or two boxes, then they don’t call it autism – they call it something else. […]

But if you have all of the above and more, they call it autism.

[…] in order for a person to be considered autistic, they must have difficulty in multiple categories.

C.L. Lynch

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[I]t becomes a scramble to create weighted lists and say, “anyone who scores under 50 points is faking,” rather than trying to figure out why so many people are hurting in such similar ways, and being hurt in such similar ways, and then stopping those things from happening.

Out of context, intersex-ionality

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Categories
Spotlight

Reverberations (Part 2)

The recent spike in diagnoses of autism […] has prompted some to suggest that it is an excuse for bad behavior or the latest clinical fad.

Amy Harmon

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[…] the stamp of medical authority.

Increasing numbers of children are given increasingly specific labels, ranging from psychiatric and neurological diagnoses such as Asperger’s and attention-deficit disorder to educational descriptors including ‘gifted’ and ‘learning disabled.’

Maia Szalavitz

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Today, autism has broadened into an almost catch-all social category. Anyone who is withdrawn or rigid or awkward might be suspected of being ‘on the spectrum.’

Caroline Narby

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Remotely diagnosing famous geeks has become a kind of hipster parlour game.

Steve Silberman

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Every generation has its defining psychiatric malady, confidently diagnosed from afar by armchair non-psychiatrists. In the fifties, all those gray-suited organization men were married to ‘frigid’ women. Until a few years ago, the country of self-obsessed boomers and reality-TV fame-seekers and vain politicians and bubble-riding Ponzi schemers made narcissistic personality disorder – diagnosis code 301.81 in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, fourth edition – the craziness of the moment. And who among us has not proudly copped to our own ‘OCD’ or ‘ADD,’ deemed a mercurial sibling ‘seriously bipolar,’ written off an erratic ex as ‘obviously borderline,’ or nodded as a laid-off friend pronounced his former boss a ‘textbook sociopath’? Lately, a new kind of head case stalks the land – staring past us, blurting gaucheries, droning on about the technical minutiae of his boring hobby. And we are ready with our DSM codes: 299.00 (autistic disorder) and 299.80 (Asperger’s disorder).

[…] Such elasticity is nowhere so relevant as at the fuzzy, ever-shifting threshold where clinical disorder shades into everyday eccentricity. The upper end of the spectrum is the liminal zone where Aspies, as people with Asperger’s call themselves, reside.

But this is not a story about Asperger’s, autism, or the spectrum […]

It is, instead, a story about ‘Asperger’s,’ ‘autism,’ and ‘the spectrum’ – our one-stop-shopping shorthand for the jerky husband, the socially inept plutocrat, the tactless boss, the child prodigy with no friends, the remorseless criminal. It’s about the words we deploy to describe some murky hybrid of egghead and aloof.

Benjamin Wallace

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While delving into discussions on neurodiversity, I came across fanciful lists of fictional characters headcanoned as autistic. Character X strives for justice: they are autistic. Character Y likes reading alone: they are autistic. Character Z is passionate and talkative: they are autistic. In fact, any character even slightly atypical/loner/enthusiastic is likely to be promptly declared as having autism. This is how I found out that the main characters in My Little Pony were autistic, because they all had significant interests and plenty to learn about friendship and social relationships. My god. Is autism supposed to be the sole reason people have any depth at all?

La Chouette

(translated by Axelle Ezhr)

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[I]t has become fashionable in some circles to describe the spectrum as the very womb of modernity.

[…]

The same rose-colored impulse has driven an Aspie wave of revisionist psychopathography, in which such diverse historical figures as Thomas Jefferson, Orson Welles, Charles Darwin, Albert Einstein, Isaac Newton, Andy Warhol, and Wolfgang Amadeus Mozart are supposed to have been residents of the spectrum.

The time-traveling diagnoses often feel like cloud-reading – the case for Darwin as Aspie, as set forth in Genius Genes: How Asperger Talents Changed the World, relies on diagnostic bullet points: his childhood as ‘something of a loner,’ his ‘obsession’ with nature, his routine of counting the laps of his nightly walks in later life.

Benjamin Wallace

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People write characters based on personal experience, stereotypes, and personal ideas of what seems interesting. Unless you are a hermit, you’ve met multiple autistic people. (You may have thought they were ‘quirky’ or ‘very introverted’ or ‘stereotypical engineers.’)

You’ve read or watched media with characters based off of autism stereotypes. They’re ‘geeky,’ ‘awkward,’ or ‘free-spirited.’ […]

Some of these characters are stated to be autistic. Other times the authors dodge the question to avoid needing to write a well-researched and responsible portrayal. Other times the writers wanted to write someone ‘quirky’ and didn’t realize that their idea of ‘quirky’ looks very autistic.

You can read or watch media with autistic or autistic-coded characters. You can meet autistic people whether you know they’re autistic or not. And when you write about interesting people, you’ll probably aim for writing people who are a little unusual. […]

Luna Rose

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Autistic Representation and Real-Life Consequences: An In-Depth Look

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When you are an unusual person, especially if you are disabled, people will often tell you that they “want to hear your story”.   

Often, it’s not really your story that they want to hear. Often they have a story in mind that they want, and they want it to come out of your mouth in order to validate their theories about people like you. […]

Ruti Regan

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Telling your story without being a self-narrating zoo exhibit

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Categories
Spectrum

Labels (Part 2)

I have never heard either of these labels [high-functioning and low-functioning] deployed to mean anything but “still not quite, you know…one of us.”

That’s what “____-functioning” means.  “Not one of us.”

Dani Alexis

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In addition to being ableist and grading against a neurotypical standard (which is its own, major issue), functioning levels attempt to reduce all the complex information about a persons abilities and needs over time and across a variety of contexts down to one dimension. That’s always going to be inappropriate dimensionality reduction, simplifying what we know to the point that it’s useless. Talking about low, medium, or high support needs isn’t going to fix this problem. Neither will talking about low vs. high masking as if either of those means a single thing. Those still use a single dimension, and you can’t shove enough information about what those support needs actually are, or what the specific effects of masking are into a single dimension for it to ever work.

Alyssa Hillary

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For many of us, engaging with an amorphous diagnostic group-think entity is the first step towards getting a solid conceptual foothold in who we are […] It’s also a first step towards securing a place in society. Especially societies which have low tolerance for divergence […]

It’s a slippery slope, isn’t it? […] You want it, pursue it, and then can be used against you. But if you don’t have it, you run the risk of getting stamped on. […]

Ultimately, it’s really up to each of us, how we engage with our identities, how we understand ourselves. How we navigate our social worlds.

VisualVox

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Semantically speaking,
         autistics are outsiders by definition.

Because autism, basically, is defined by divergence.

Based on two articles by Caroline Narby

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Just because it’s not information you need, that doesn’t mean it’s a useless word.

Alyssa Hillary

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Labels are Tools – They can be used for good or bad things

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When labels become boxes, that’s bad. But sometimes labels are road maps. Guidebooks. They show you how to find the information you’ve needed but never knew how to find or even if it existed.

Jess Mahler

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Calling disabilities by their right names isn’t about labeling, it’s about breaking isolation and making important things speakable.

Ruti Regan

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[T]hey think the problem was that they treated their child like they were intellectually disabled, and they weren’t.

But that’s not the problem.

The problem is that they thought their child was intellectually disabled, and so they didn’t treat them like a person.

Julia Bascom

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It would be great if labels like autism weren’t necessary.

It would be great if ableism didn’t exist, but that’s one hell of a hypothetical.

Ableism is an extreme and far-reaching problem that can’t be solved without labeling the specific disabilities of the people being harmed.

In a world where most people speak with their mouths and assume everyone else does too, I need the autism label to explain why typing is better. In a world of sensory assault, where “I don’t want to” is not a sufficient excuse, I need the autism label to justify my self-protection.

Alix Ditto Au

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Yes, labels may bring prejudice and ignorance, but they can also bring understanding and much needed support.

Laura Rutherford

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Categories
Spectrum

Labels (Part 1)

[…] as soon as someone says they’re on the autism spectrum, we categorize them and treat them differently.

Creigh, Caley

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It’s interesting the way that little label changes where the presumption lies.

If you’re NT and you decide to go explore a local park on a whim, you’re just indulging a whim. If you have ASD though, that’s ‘dangerous wandering’.

If you’re NT and you hire someone to do your cleaning or your lawn, you’re just freeing up spare time for yourself, but if you have ASD, you’re not ‘living independently.’

Cynthia Kim

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When I am open about being Autistic, I am handing people a weapon to punish me with. [Many times] my autism has been invoked during a disagreement. I have ended up leaving so many communities because I was told that I was only disagreeing because my autism meant I didn’t really understand. […]

Anytime someone wants to dismiss my opinion or experience, they point out that I am Autistic, as if that trumps anything and everything. […]

Telling people that I am Autistic gives them the opportunity to understand me better.

It also gives them the opportunity to dismiss anything and everything about me as irrelevant, deluded, pathological, unacceptable. No one has to provide a logical counter for anything I say because my words are Autistic words so they mean nothing. They are merely symptoms and can be disregarded.

Max Sparrow

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Like it or not, public perception of autism is not very diverse (yet). […] We need adjectives like ‘mild’ or ‘severe’ to help other people understand the extent of the autistic person’s needs.

Chris Bonnello

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There is no such thing as severe autism. There are autistic people.

Autistic people all have needs to be met. Just like everyone else.

These aren’t special needs, or different needs, they are human needs.

Autistic people need food, shelter, connection with other people, and to feel safe and valued. Just like everyone else.

Autistic people will communicate their distress when their needs are not being met. Just like everyone else. […]

They are not ‘severely autistic’– they are autistic and severely misunderstood, severely stigmatised, severely stressed, severely anxious, severely exhausted […]

Michelle Sutton

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My ‘high functioning’ child is not yet potty trained and still has to use diapers.  We support her and teach her, but we never shame her publicly or otherwise for being Disabled and on a different developmental path than other children her age.

Wait, does that make her ‘low-functioning’?  I get confused because she is also reading ‘The Hobbit’, which might make her ‘high-functioning’.

Romana Tate

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(See previous quote for context)

Deviating from the gist of the quote; it is interesting to note how – generally speaking – using diapers and reading The Hobbit are associated with respectively ‘low-functioning’ and ‘high-functioning’ in the first place.

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Part of the problem of the “labels are for jars” argument is that it inextricably links the label with diagnosis and pathology. It completely ignores the possibility that the label can be part of a disabled identity [when it is not] entirely defined by medical terms.

Kim Sauder

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A diagnosis is meant to give a reason. We can say, look, you have cancer. That is why you are feeling so unwell. You have depression. That is why you are so sad. You have this, so you are that. We expect a direct correlation, a cause, a salve to soothe us against all the things in the world that don’t make sense. The things that hurt us. A diagnosis tells us if A, then B. In this way, we define and we mend and we neatly slot the world into order. A diagnosis of disability tells the world where to fit a person, what they can and cannot do, how they will be loved and love in return. It designates relationships and builds hierarchies. From the moment my sister was diagnosed, people expected it would define us, too. Her and me. When they spoke they left so much room for the wrong words, such as caretaker and burden and problem, but too little for the right ones, such as sister and friend.

Out of context, Lauren McKeon

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Being assigned the label also became an experience of crossing over the threshold of ‘normal’ to ‘abnormal.’ […] They also continually compared their inner experiences and behaviors against an imagined standard of ‘normal.’

Out of context, Susan G. Goldberg

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