Atmosphere – Breeze

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[R]ight from the start, from the time someone came up with the word ‘autism’, the condition has been judged from the outside, by its appearances, and not from the inside according to how it is experienced.

Donna Williams

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On how autistic people have to waste so much time trying to explain that our actions and behaviors don’t necessarily mean what other people assume they mean. And how people will actually argue with us about what our behaviors mean, because they erroneously believe body language and psychology are universal and are arrogantly intent on projecting the meaning of their own typical behaviors onto everyone else.

Twilah Hiari

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We say a child has autism if he displays a combination of traits and behaviours that are deemed to be problematic […] Professionals observe these ‘autistic behaviours’ and then assess the people who display them by using a sort of circular reasoning: Why does Rachel flap her hands? Because she has autism. Why has she been diagnosed with autism? Because she flaps.

Barry M. Prizant

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But it’s the research with typically developing babies that truly suggests we should take social attention theories of autism with a large dose of salt.

Too often, researchers assume a specific trait, such as social disability in autism, and then reach backwards looking for something to explain it. Or, they might see two traits – social disability and avoidance of eye contact – and link them together, because intuitively, eye contact seems related to social functioning. This is not good science, and the flaws of this approach become especially obvious when it is done without reference to how the trait [for instance, social (dis)ability] typically develops, as happened here.

Emily Morson

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For seventy years (at least), people have been making assumptions about autistic people based on outward behaviour.  Even the diagnostic criteria for autism is based on what is easily observable by an onlooker. They think that the stranger we act, the ‘more autistic’ we are.

C.L. Lynch

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Autistic being is predicated on un-being. In order to claim an emotion, we need to have it empirically validated.

[…]

An autistic person cannot experience abuse, cannot feel her body being shoved against the cold wall of a hospital psych ward – an autistic person cannot experience systemic violence unless a non-autistic person validates those claims.

Melanie Yergeau

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In my experience, the autism spectrum diagnostic criteria are frustratingly incomplete.  They paint a picture of that which can only be seen on the outside, by an observer who knows nothing about the firsthand experience – I.e., “what it’s like” to actually be on the spectrum.

Laina

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Next

Atmosphere – Silhouette (Part 3)

Previous

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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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Atmosphere – Silhouette (Part 2)

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Each individual who has an autism spectrum diagnosis got that diagnosis based on deficits. That isn’t good or bad, but rather, simply the way diagnosing works […] based on the social and expected norms exhibited by the majority of people.

Judy Endow

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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.

Peter

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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.

Karla McLaren

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The underlying attitude [of some professionals] sometimes appears to be: “How dare you continue to attempt to think for yourself when I am here before you with my obviously superior knowledge, status, judgment, and insight?”

Out of context, Lundy Bancroft

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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.

Robert Chapman

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

how does one quantify normal?

Jenna, Elijah, Tamarjay, Derrick

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Next

Truth Beacon – Experiences

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The scientific literature is accurate, as far it goes. Multiple sclerosis results in progressive disability (there are scales for measuring this) or loss of function (you don’t need scales for this). But science is empirical, confined to the observable sphere. Science doesn’t know what anything feels like, the nature of anything. […]

Out of context, Paraic O’Donnell

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disability is a complex identity {if it even is _{(considered as)} one}, and disabled people are multifaceted non-monolithic human beings

Partial quote, Wendy Lu

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The moment you forget that you can make mistakes, you are able to do great harm to the people you base your ego on understanding. […]

Viewing yourself as Good With an entire category of people opens you up to massively egotistical mistakes that lead you down the road to outright physical and emotional abuse.

The best way to approach learning about cats is with a combination of respect and humility. Know that you’re going to mess up, but don’t focus on it so hard that you don’t even try. […]

Out of context, Mel Baggs

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Some of the better research I’ve been part of has given me space somewhere to share what I think and feel or how my experiences do or don’t fit. It also follows up in some way with the conclusions. There’s a relationship, a sense of reciprocity at least in the process even if we don’t agree at all about anything else. It doesn’t have to be participatory to be collaborative in that sense. Nor does participatory research bypass issues of exploitation or harm in and of itself. The nature of community is the diversity of perspectives and voice – it is rare to be able to accomodate each of them.

The other kinds of research (and I include interview here) feel exploitative. My experiences are collected as evidence of ideas I don’t agree with and contorted to fit arguments that don’t include me. Or they are simply inept, using my time to educate themselves on matters they haven’t bothered to read about.

Sarah K Reece

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It’s perfectly okay to cherry pick ideas and strategies from different – even conflicting – frameworks to create something individual and effective for yourself/selves.

The Dissociative Initiative

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[…] assume they are a person, and remember what you don’t know.

Julia Bascom

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In the same series:

Truth Beacon – Research & Authority

Truth Beacon – Advocacy