Categories
Definitions & Characteristics

Atmosphere – Snowflakes (Part 1)

Yes, I have social problems, but honestly I feel that the idea that autism is a ‘social disorder’ is putting the cart before the horse, and really missing the point. Autism is primarily a sensory and information processing and filtering difference, and the descriptions of autistics written by allistics are simply descriptions of the differences that allistics can see, and think are important.

Kirsten Lindsmith

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Differences in sensory processing do of course affect what might be called ‘social skills,’ for example many autistic people don’t integrate incoming visual information in a way that allows them to easily notice the tiny subtle differences in body position and facial expression that are used in neurotypical communication […]

Sensory integration also affects motor movements, and so many autistic people may not show the body language that non-autistic people expect for the way they are feeling. […]

Quincy Hansen

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In recent years the narrative has shifted from saying that autistic people feel too little – usually due to a purported empathy deficit – to saying we feel too much.

Perhaps the most worrying thing here regards how this new framing leads to autistic suffering being blamed on autistic oversensitivity.

In this regard it is worth drawing attention to a form of psychological domestic abuse sometimes called ‘gaslighting’. What this refers to is the systematic undermining of the victim’s sense of reality in order to make them think the abuse is their fault rather than the fault of the abuser. Very significantly, one of the core ways to do this is for the abuser to convince the victim that they are just too sensitive, meaning that any hurt they feel is not down to their abusive environment but rather due to their own inability to cope with the world. […]

With this in mind, I am wary of all accounts that frame autistic suffering and disablement stemming from us being hyper-sensitive. Far from reversing it, all this does is make the pathologisation of autism more subtle, more hegemonic.

In fact, the issue is that the sensory world is designed for the neurotypical, and so has by and large failed to accommodate the autistic sensory-style. That is, whilst it is true that we suffer from ‘too much information’, this stems from the neurotypical-centric way in which the world is organised – not due to how we process the world as such.

Robert Chapman

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So I’m sort of bad at figuring out how I feel about things, or just how things are, objectively. This is probably due to growing up with gaslighting although I also think that not being able to identify your feelings is supposed to be normal for people with ASD.

Although maybe it’s normal for people with ASD as a result of gaslighting.

Amanda Forest Vivian

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[…] But it is also a context where many of the things – such as eye contact and physical contact – often used by parents to show affection for their children either panic us or cause us physical pain, and where our ‘emotional growth’ might be measured by others in terms of how much we can deaden our bodies and emotions and allow ourselves to be subjected to terror and pain on a regular basis.

Imagine growing up somewhere where to be hit upside the head and locked in a room with a large predatory animal are the two highest forms of affection, and your emotional development is gauged on how well you learn to put up with those situations.

To people who experience certain kinds of touch as pain and eye contact as a predator-style threat, that is some part of our experience growing up. And that is an experience we can have in the most loving and caring of families, if our families don’t understand what those experiences feel like to us (and not all of us show pain and discomfort by pulling away, either, so it’s not always possible to gauge our reactions by that sort of thing).

Mel Baggs

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Neurotypical kids’ social development is fostered by feedback from their parents, who mirror their behavior and thus model reciprocal interactions from an early age. As Morton Ann Gernsbacher and her colleagues pointed out, autistic babies don’t give the usual cues their parents are expecting, and the parents don’t necessarily mirror them or give them the social feedback that helps neurotypical babies.

So how much of an autistic person’s social disabilities come from their own characteristics, and how much from early differences in their interactions with caretakers?

Emily Morson

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culture, class and disability play such a huge role in how we show emotions

Mel Baggs

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Many autistic traits are a result of being so in tune with other people’s energy that it literally hurts.

Shutting down to others emotions and taking them on without discrimination are two sides of the same coin.

Briannon Lee

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Categories
Definitions & Characteristics

Atmosphere – Silhouette (Part 2)

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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Categories
Spotlight

Truth Beacon – Research & Authority

[N]o matter what you do in the disability community, you will ruffle feathers just because it’s such a huge community, and it’s heterogeneous. It’s full of very different opinions and backgrounds because disability affects everyone and anyone in any culture. So there’s gonna be, of course, dissent and disagreement.

Caitlin Wood

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[O]ne of the biggest dangers that the culture of the autistic community faces is the allure of a single story told from within.

chavisory

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To be an autistic in a minority culture is to realise that we are not all standing on the same ground when it comes to our experiences as autistics.

Dream Walden

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But autism researchers are not geologists, to paraphrase @aneeman. We’re not rocks. We talk back. If autism researchers don’t want to work with people, they should study something else.

Sara Luterman

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Both [the personal experience and the scientific literature] provide insights. But these insights are qualitatively different, and no universal standard sets one above the other.

William Mandy

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The four kingdoms [Illness, Identity, Injury, Insight] may not capture the entire universe of the autism spectrum, but they describe largely non-overlapping perspectives that now divide the world of autism.

Thomas Insel

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No one autism story takes every single perspective into account. […]

Many of the perspectives conflict […] and there are just so many that it’s nearly impossible to remember to include them all.

Stuart Duncan

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[T]here are, I think, many versions of disability pride

Susan Wendell

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We don’t all agree. You don’t have to agree with all of us. You can’t possibly agree with all of us anyway. A lot of times people embroiled in identity politics get really wrapped up in the idea that the oppressed person is always right about their oppression. That’s bullshit. We can be as wrong as anyone.

However, we have on average thought more deeply and for longer about our oppression than other people have, so you can benefit from our experience when dealing with the way your own oppression takes the same shape as ours.

You can learn a lot more about ableism by looking into what disabled people have already figured out about it

Mel Baggs

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…the erroneous presupposition that observation of human performance is an exact science, that performance is evidence of ability, or simply is ability.

Idea and keywords by C.F. Goodey

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[A]utism research […] a mix of insights and insults.

PredictionError

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In non-autism areas, poor quality research and its harms – its waste of resources, its misleading findings – are vigorously condemned. There is recognition that even the best existing research standards are flawed and need always to be improved.

But when it comes to autism, standards have instead been lowered or discarded to accommodate the extremely poor autism intervention literature.

Poor standards in intervention research are seen not as harmful and wasteful, which they are, but as what autistics need and deserve. Resources have poured not into improving these abysmal standards, but into making the very poor quality autism intervention literature more powerful and influential.

Michelle Dawson

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In the same series:

Categories
Spectrum

Lines – Amber (Part 2)

Sometimes the same behaviors in a person {read as} neurotypical would not even be noticed.

But because people with autism are scrutinized all day, every day, by teachers, therapists, parents, and almost everyone else around them, their behaviors are labeled, treated […]

Partial quote, Lisa Jo Rudy

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When you tell me there is no such thing as normal, this is true, in a sense. The things we as a society prize as normal can not all be found in one person. […] There is no one ‘normal’ person, never was, never will be. So many of us are more comfortable with people like ourselves that we take as normal those with a certain amount of similarity to ourselves, and if we have sufficient power in society, this normal may override the normals of others.

Alyssa Hillary

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There is simply no need to speak at all of ‘what makes us human’ in scientific discourse. What makes us human is nothing, save perhaps our rich diversity.

Sophie Vivian

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A lot of people think they can relate {to my struggles} which means it’s brushed under the carpet as not a big deal.

Partial quote, Amy Miller

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“You know how it is. People like that . . . they don’t experience emotions the same way that you and I do.” […]

I thought about telling her [that I am autistic]. I chose not to. I’m not sure what it would have accomplished if I had told her […] revealing myself to be a person like that

The truth is, I don’t experience emotions in the same way as that woman who spoke to me about her disabled clients. Or in the same way that you do. No one does.

Human beings are cognitively and behaviorally diverse. We are so diverse that we defy taxonomy entirely.

There really is no norm, no fixed point of reference from which to deviate.

Caroline Narby

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[F]ew issues are completely exclusive to one group, but some things affect some groups more strongly than others, and that can be very important.

Elizabeth Bartmess

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[S]ome critics […] suggest abandoning the term ‘autism’ altogether. In their opinion, labelling autistic people as such was merely a mistake: We thought there was a natural category called ‘autism,’ but now that we know more about it, we can see that this was an error.

[I]dentifying as autistic may not be biologically meaningful, but it is politically meaningful

[W]e have our own communities, norms, and practices […] Autism, in other words, has begun to develop into a culture, and this culture opens up the space for autistic behaviors to begin to manifest as meaningful […] challeng[ing] existing standards of acceptability within […] dominant social and ideological framework[s]

Some of our most significant and deeply-entrenched human categories – like race and gender – are partly rooted in a constellation of physical elements, and partly in historically situated social construction.

They do not reside on a single gene, or even a network of genes, and yet they are both extremely ‘real’ and extremely important to our conceptions of self and others.

Robert Chapman

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When you are different it’s okay for you to not quite meet up with the rest of the world here and there, because most of the time, when it matters, everything syncs up.

When you are disabled you don’t have that luxury.

 

When you are disabled you have to prove, over and over again, that you are a real person […]

Julia Bascom

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In a world where autism exists, because we do taxonomize human difference and build systems of power around it, I am autistic.

Caroline Narby

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