Categories
Definitions & Characteristics

Compass Sailing

What does it mean to be on the spectrum?

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Pivotal words generally used in defining and presenting autism:

A

ability to
affinity with
difficulty with
disconnection of
easier to
find challenging to
hard to
have control of
have trouble to
need to
take longer to
unable to

.

B

abnormal
alternative
atypical
different
distinct
exceptional
noticeable
special
unusual
variation

.

C

absence
additional
decreased
excessive
extra
extreme
heightened
high
hyper
hypo
increased
intense
lack
less
more
reduced

.

D

affected by
comfortable with
content with
dislike
distressed when
enjoy
overstimulated when
overwhelmed by
stressed by
tired by
uncomfortable with

.

E

deficient
failure to
impaired
poor

.

F

fixated
inflexible
insistence
obsessive
perseverative
repetitive
restricted
rigid
specialized
stereotyped

.

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Usually paired up with things falling in those categories:

behaviour
body language
changes
cognition
communication
daily living
development
emotions
focus
information processing
interests
language
learning
movement
sensory experiences
speech
socialization
thinking

etc.

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Extras:

Categories
Spotlight

Truth Beacon – Experiences

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:

Categories
Spotlight

Truth Beacon – Advocacy

“Shut up and listen to marginalized people” isn’t quite the right rule […] We need to do better by each other, and start listening for real.

Ruti Regan

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[…] The whole thing is set up in a way where the only way to move forward is to find something to oppose and devour. There is never a point where the way you do things is good enough. You have to find more and more words and ideas to oppose. Words and ideas that mark who is in the know, and who is bad. These things constantly change.

[…]

Within this culture, you stop noticing your surroundings. Instead, you see a network of lines representing various power dynamics, bad words and ideas, good words and ideas, and the way this community responds to them. You stop being able to see that this is not the only way to respond to injustice.

Mel Baggs

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[It’s possible that one who] outwardly celebrates the diversity in labels, doesn’t necessarily celebrate the diversity of thought – not seeming to grasp that the two by necessity has to go together. A group of diverse people would take different routes to achieve a purpose. They would have different ideas on how to do it, when to do it.

potteresque-ire

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[…] Autonomy as a value of deliberative democracy is contested by non-disabled family members who advocate with their disabled family members in order to portray the interdependency of their interests. Charlie’s experience thus gives new meaning to the value of reciprocity in deliberative democratic theory, moving it away from mutual competence towards mutual dependence.

Stacy Clifford

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People everywhere, every day are trying to navigate {many} kinds of dilemmas, and {some of the time} are doing so in a culture that refuses to discuss {them}.

Partial quote, Sarah K Reece

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When new ideas emerge in society there is usually discussion about them. It’s a sound general principle –  the best way to evaluate new ideas is to explore them critically and freely.

{Plenty of} issues […] are of importance to society as a whole. […] Surely we can agree that {people, especially the referred groups} should have the right to discuss it?

This must be done in an atmosphere of mutual respect in which anyone is free to critically discuss anything they wish, using whatever (respectful) terminology they choose.

The underlying issues, {redefinitions, and introduction of new concepts} must be seen for what they are: nobody’s exclusive property.

Partial quote, Jonathan Best

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In the same series:

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: