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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Categories
Definitions & Characteristics

Atmosphere – Rays (Part 1)

[…] an autism diagnosis can be a tool for empowerment. It’s an answer and an explanation, it’s a way out of cycles of self-blame and guilt, it’s a passport to an entire community, and if we’re lucky, it’s a connection to the understanding, supports, and services we need in order to truly thrive, sometimes for the first time in our life.

Julia Bascom

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Looking back over my life through a different lens adds perspective and dimension to my experience.

It explains and validates.

It helps me to accept myself and changes my internal dialogue.

It is a raw process. It is taking this part from here and looking at it in detail, deciding if it helps or hurts, then grafting it where it belongs. It feels more comfortable over all to have things in their new places, but the edges sting where they were pulled at, and sometimes there is an empty space left where it was that I am not sure what to fill with yet.

Michelle Swan

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Speaking about past events using the present’s conception doesn’t necessarily aim to deny the perception that was dominant in the past. Nonetheless, there is often a pervasive subtext that the present speaker considers this past conception to be deeply wrong, and so uses the present’s language to describe the past in an attempt to say it right, according to the present time.

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Access to a collective autistic wisdom, absent for a lifetime, is a powerful force. Through it we can discover the language and concepts we need to ease our passage towards more congruent identities

Sonia Boue

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Having {frameworks} for experiences can be profound, the difference between mute suffering and solidarity and strength in the face of adversity.

Partial quote, Sarah K Reece

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It really helps to have a community who don’t react to my descriptions by saying “that’s weird” or “surely you mean you’re [insert different emotion/reaction]”, and also to have read so many other first-person accounts from other autistic people that chime with my own. Having the language to communicate my feelings with others who can relate is amazingly powerful, and it feels like every new revelation helps me to figure something new out, and describe it better. It makes me think a lot about how important community can be, how much we can learn by having people we can relate to in our lives, and how valuable it is for us to have ever more accurate and authentic representations of different ways of seeing and experiencing the world.

Sonny Hallett

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[…] Remind yourself that seeing your limits just means you’re seeing more of the parameters in the equation. Remind yourself that most people don’t know their own limits that well, and they can’t plan for it. They’ll hit the wall at full speed. So knowing this is a power that you have.

Kate

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[Diagnoses and/or labels] can often be adopted by people […] in order to structure and explain their experiences.

Some people find that having names for their [experiences] provides them with a sense of order and a way to reconstruct their lives.

Finding ways and new meaning in which they can participate in community and re-write their own personal and collective histories, enables a reclamation of voice; a re-naming that encourages re-positioning and the gaining of power and agency.

Monika Dos Santos, Jean-François Pelletier

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Even without an official diagnosis, many people [can] benefit from learning coping techniques with people who have similar life experiences.

Worst case scenario, someone who isn’t autistic learns how to function more easily from people who are autistic. [It’s] the curb cut effect: Disability accommodations can improve the lives of more than just their target audience.

Sara Luterman

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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

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B

abnormal
alternative
atypical
different
distinct
exceptional
noticeable
special
unusual
variation

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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

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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: