measurements – Autism: Explorations

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

Atmosphere – Silhouette (Part 2)

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[T]he way information is presented influences our judgement and decision-making: the framing effect. How we ‘frame’ information has an impact on how we treat it, and thus on outcomes. So if your research project is based on the assumption that your subjects have a disorder or a deficit, that presumption will be reflected in both your process and your results.

What we see in research involving autistic subjects is that autism is frequently framed as ‘non-neurotypical’, i.e. autistics are measured against people who are non-autistic and thus end up being defined by what they aren’t.

For a comparison, imagine a linguistic study of a Swedish-speaking community by French academics where the conclusion is “they can’t speak French”.

If ethnocentrism is judging another culture solely by the values and standards of one’s own culture, then what we often see in these papers is a kind of neurocentrism, judging another neurology by the capabilities and standards of one’s own neurology.

In regard to these research biases, it’s revealing to look at how the same academics frame outcomes differently depending on whether their studies involve autistic subjects or not. […]

So, if you’re non-autistic and more rational, it’s because you’re good at regulating your emotions.

But if you’re autistic and more rational, it’s because you’re deficit in recognising your emotions.

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Our current biomedical approach to autism, which scans, studies, and reports on autistic people in terms of their differences, deficits, and disorders is actually making autistic people’s lives more difficult and their futures bleaker because we’re teaching people that autistic people are not like us.

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[W]ithin psychiatric theory, it does not matter whether a psychological difference is considered ‘hyper’ or ‘hypo’: either way, it is taken to be a matter of pathologically falling outside the norm.

‘Too much’ may be different to ‘too little’, but it is still considered just as inherently bad.

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how do we measure Schizophrenia, Autism, ADD/ADHD, other than in juxtaposition to normal[?]

how does one quantify normal?