Categories
Definitions & Characteristics

Atmosphere – Rays (Part 3)

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.

[…]

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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Categories
Definitions & Characteristics

Atmosphere – Rays (Part 1)

[…] an autism diagnosis can be a tool for empowerment. It’s an answer and an explanation, it’s a way out of cycles of self-blame and guilt, it’s a passport to an entire community, and if we’re lucky, it’s a connection to the understanding, supports, and services we need in order to truly thrive, sometimes for the first time in our life.

Julia Bascom

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Looking back over my life through a different lens adds perspective and dimension to my experience.

It explains and validates.

It helps me to accept myself and changes my internal dialogue.

It is a raw process. It is taking this part from here and looking at it in detail, deciding if it helps or hurts, then grafting it where it belongs. It feels more comfortable over all to have things in their new places, but the edges sting where they were pulled at, and sometimes there is an empty space left where it was that I am not sure what to fill with yet.

Michelle Swan

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Speaking about past events using the present’s conception doesn’t necessarily aim to deny the perception that was dominant in the past. Nonetheless, there is often a pervasive subtext that the present speaker considers this past conception to be deeply wrong, and so uses the present’s language to describe the past in an attempt to say it right, according to the present time.

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Access to a collective autistic wisdom, absent for a lifetime, is a powerful force. Through it we can discover the language and concepts we need to ease our passage towards more congruent identities

Sonia Boue

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Having {frameworks} for experiences can be profound, the difference between mute suffering and solidarity and strength in the face of adversity.

Partial quote, Sarah K Reece

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It really helps to have a community who don’t react to my descriptions by saying “that’s weird” or “surely you mean you’re [insert different emotion/reaction]”, and also to have read so many other first-person accounts from other autistic people that chime with my own. Having the language to communicate my feelings with others who can relate is amazingly powerful, and it feels like every new revelation helps me to figure something new out, and describe it better. It makes me think a lot about how important community can be, how much we can learn by having people we can relate to in our lives, and how valuable it is for us to have ever more accurate and authentic representations of different ways of seeing and experiencing the world.

Sonny Hallett

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[…] Remind yourself that seeing your limits just means you’re seeing more of the parameters in the equation. Remind yourself that most people don’t know their own limits that well, and they can’t plan for it. They’ll hit the wall at full speed. So knowing this is a power that you have.

Kate

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[Diagnoses and/or labels] can often be adopted by people […] in order to structure and explain their experiences.

Some people find that having names for their [experiences] provides them with a sense of order and a way to reconstruct their lives.

Finding ways and new meaning in which they can participate in community and re-write their own personal and collective histories, enables a reclamation of voice; a re-naming that encourages re-positioning and the gaining of power and agency.

Monika Dos Santos, Jean-François Pelletier

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Even without an official diagnosis, many people [can] benefit from learning coping techniques with people who have similar life experiences.

Worst case scenario, someone who isn’t autistic learns how to function more easily from people who are autistic. [It’s] the curb cut effect: Disability accommodations can improve the lives of more than just their target audience.

Sara Luterman

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Categories
Definitions & Characteristics

Atmosphere – Streaks (Part 1)

When we describe autism in terms of binaries, discourse communities, or circles, we construct a very unreal, [very black and white,] very us/them reality. […]

The typical autism essay, ironically, often proclaims that autism cannot be placed in a box, all the while concurrently placing autistics in boxes – LFA, HFA, mild, severe, verbal, nonverbal, etc.

And, I would also posit that autism should not be (because it cannot be) contained within tidied-up circles, which, despite being round, are themselves boxlike.

Discourse community theories fail to account for how these circles get created, get named, get claimed, get dismantled. In effect, discourse communities largely render their users passive.

In “Hybrid,” Bizzell claims,

These elements [discourse conventions] are so powerful that the discourse could be said to take on a life of its own, independent of individual participants; it could be said, even, to ‘create’ the participants that suit its conventions by allowing individuals no other options if they wish to be counted as participants.

Per this logic, I have been passively constructed into autism – by discourse. I have been passively constructed into aspiedom – by discourse. My other autistic commonplaces – or identity markers – have also been shaped or spawned by discourses: stimdom, speechdom, lack-of-eye-contactdom, patterndom, take-everything-literally-and-then-somedom.

But discourse alone can’t name these things, can’t claim these things. These facets of me, the diverse facets of other autistic individuals, of human individuals – autistic cousins or not – only fit within these circles because someone has squished them there, has proclaimed generalization as the new world order.

Low-functioning autism exists because the people who write the typical autism essay say it does: they make the circles; the circles themselves don’t independently create themselves; the circles aren’t material objects that exist or breathe or birth or contain people, all neatly sorted; the circles have human help. While I like to objectify humans and categorize stuff [very much], circles alone just don’t do the trick.

Melanie Yergeau

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There are many autistic people whose best method of communication is nonverbal. By which I mean, not speech, not writing. […]

Most people don’t know this because the current theories of autism all involve us being terrible at nonverbal communication. By which people mean, terrible at one specific kind of nonverbal communication that most nonautistic people are good at.

So for many of us – nonverbal communication, and the world of things outside of words, are our best way of communicating. Whether we can also use words or not. […]

It’s true that many people who are thought not to be able to use or understand language, actually are. And it’s terrible that they are overlooked. But in their desire not to overlook such people, many people claim that all disabled people who can’t communicate through speech fall under this umbrella. And that’s simply not true. In order to communicate with people who will never use words, you have to learn their language.

Mel Baggs

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‘Autism steals their voices.’

The idea of “voicelessness” presents itself as a convenient vehicle to get from autism to (living) death.

Voicelessness, here, does not refer primarily to literal variations of mutism […]

To be a voiceless autistic person does not entail an incapability of using language, but rather, an all-encompassing credibility gap.

Are autistic people, after all, expressing themselves, or merely their symptoms? Are they themselves expressing, or is autism? […]

When autism speaks, autistic people do not.

Voices here are only reserved for native speakers of a particular kind of symbolic language.

This language assumes and creates a normative, human subject, one who both comprehends and is comprehensible to other humans.

The faith […] is put in a shared, normative language, as a tool to fathom oneself and other people […]

This mechanism, while steeped in hyperbolic doubt, is intertwined with an essentialist humanism.

If the symbolic connects all humans to a network of intelligibility, the subjects who fall outside of this network must not be fully human.

Anna N. de Hooge

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Categories
Definitions & Characteristics

Atmosphere – Silhouette (Part 3)

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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