Categories
Navigating

Stitches (Part 2)

Life ‘with’ autism becomes life, death, almost living, mostly dead.
Why must I always cherish symptoms and meaning?

Autism advocacy that narrates autism as some ‘thing’ that is ‘in’ and not ‘of’ some people functions to shape life as having autism as (one of) its condition(s).

As autism is made (and kept) separate from life itself, and as living people’s bodies are split into vital and nonvital parts, life ‘with’ (the condition of) autism becomes life along a vital spectrum […] that inaugurates new, possible categories of life (and death): ‘almost living’ as well as ‘mostly dead’; […] a necessary precognition for acts of violence that are normalized as necessary.

Anne McGuire

Ways in which diagnosis is useful […] It extends the reach of genocide and saves lives.

Eli Clare

Symptoms only take us so far.

My hands create and transform space as much as they occupy it. […] Sometimes I am the only person who knows what my hands are meaning. Sometimes even I don’t know what my hands mean – but why must I always cherish or privilege meaning?

Melanie Yergeau

Categories
Treatment

Normally

It is pretty interesting, if reading other people and changing your behavior to fit them is such a basic skill for people without autism, that people need to even be told about floortime or related methods at all (and that an abnormal person like me finds it really intuitive, at least in its purest forms).

I do think reading Greenspan has been helpful for me because it gives specific examples of how to apply this philosophy, but when I hear people acting as if floortime (and its less awesome and inexplicably expensive counterpart, Son-Rise) is some kind of complicated scientific theory, I wonder how those people normally treat other people in their regular lives.

I mean seriously, it actually makes me concerned that people think there is something weird or groundbreaking about such a basic way of relating to other people.

This stuff doesn’t always have some amazing effect (it definitely doesn’t ‘cure’ anything like Son-Rise claims, which is why Son-Rise is so dumb) but I have had lots of nice interactions/connections with nonverbal people who, if I was stupid enough to go up to them and ask “Hi, how are you?” and expect eye contact and a handshake, would probably strike me as not being interested in people.

Amanda Forest Vivian

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Categories
Treatment

Evidence-based

Therapy is more art than science. Be suspicious of people who claim that their approach is strictly evidence based. […]

Ruti Regan

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I’m finding myself increasingly annoyed by the emphasis on evidence-based practice in the autism world. This is not because I don’t see the value in responsible intervention practices that are consistent with research and theory.

However, I’m not convinced that championing ‘evidence-based practices’ is the most useful way of confronting quackery.

Having a randomized-controlled trial showing that your intervention does what it is supposed to is great, but there are some areas where quantitative evidence runs into limitations.

  • There are many outcomes we can measure, but are all of them the right outcomes to measure?
  • How good are we at measuring things?
  • Some interventions are harder to study than others.
  • Even if it is easy to study a given intervention or measure a given outcome, researchers might not be interested in doing so.
  • Evidence-based practice is something that typically comes at the group level.
  • There seem to be many areas where quantitative evidence alone is insufficient.
  • Realistically, we’re not going to ever be able to develop the sort of evidence base for all the things we think work that we would like.

Based on a post by Patrick Dwyer

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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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