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

Atmosphere – Snowflakes (Part 2)

[…] You describe introverts becoming rigid under stress.

Autistics who are under constant, intense pressure (as are many, by well-meaning parents and others who want them to function) become very rigid and black/white in their thinking, this is then taken as an inherent part of autism. If they are given less stress, their thinking ‘magically’ becomes more flexible.

Ettina

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[…] The closest analogy I can make is that what happens prior to initiation is like standing on the edge of a swimming pool with the intention of jumping in.

You know, that few minutes where you dip a toe in, check the temperature, adjust your suit and goggles, comment on how cold it looks, do a few arm windmills, bounce up and down, take a deep breath, then another. There’s no real point to all of those actions and the jumping in is inevitable. But not quite yet.

Cynthia Kim

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@neuroemergent_insurgent has an alternative perspective on EF (executive function).

She posits that EF is a set of values, not a set of skills.

Emmeline Tyler

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Autism parents often hear from the professionals that “kids with autism thrive on routine.” On the surface this appears to be true. Autism kids are drilled to comply with a certain routine and when the routine changes, they react loudly and sometimes physically. Ergo, they must need routine.

In my opinion, professionals like routine because it makes their jobs easier. I am not convinced that encouraging such rigidity is in a child’s best interest.

Amy Yardley

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To comply with a certain routine and needing to be prepared for something are not necessarily the same thing.

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is change a problem for autistic people?

They say Autistic people don’t cope well with change and unexpected events, insist on routine, and can be oppositional if they don’t get what they prefer.

It’s just not that simple.

Autistic people do struggle with change and unpredictability. But it’s not just because we don’t like change.

We struggle with change because of what it costs us in terms of increased demand on our sensory system, executive function resources and how it impacts on our energy budget.

If we are well supported during a change or unexpected event we find it much easier to navigate and to manage the increased demands the new situation places on our bodies, our processing and our emotional responses to all that.

Michelle Swan

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Self harm is complex and full of contradictions. Something I often remind people is that it is common in the animal kingdom. Animals and birds experiencing inescapable pain – loneliness, captivity in an unsuitable cage: too small, too stressful, too close to predator species, overcrowded, or physically ill and suffering, many will head bang, pluck their own feathers, chew or lick off their skin, tear out nails and claws. On one level, self harm is a nearly universal response to certain kinds of suffering. This is the context, the broad picture. We are mammals, part of the world, nervous systems wired this way.

Zooming right in, we get vast diversity in who, how, and why. Some find a single cause and many more a complex web of reasons, needs, struggles. […]

What it is not, and has never been, is the circle I hear so often. They self harm because they are mentally ill: we know they are mentally ill because they self harm.

We self harm because something is wrong, because of pain, because it is the best way we’ve found to meet a need we don’t understand or accept or can’t express.

Sarah K Reece

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In many instances, the discourse(s) of involuntarity governs autism as a condition. Most obviously, autism is not a voluntary condition – one doesn’t choose autism, per se.

Of course, framing autism as a neurological involuntarity is a false construct. After all, does anyone really choose their neurology? And yet, even though neurotypicality is as much an involuntarity as is mental disability or neurodivergence, the construct of involuntarity is culturally inscribed into autism as a condition. Autistics wrench and scream and rock their bodies, and they have no choice; they have no agency; they project little to no rhetorical or narrativistic purpose.

Within this passivity-centric framework, involuntarity might encompass shit smearing or body rocking; it likewise encompasses any act of communication, or what white-coat types might otherwise reduce to inappropriate behaviors; it encompasses embodiment; it encompasses how one dwells in the world. It signifies a lack of purpose, a lack of audience awareness, a lack of control over one’s own person – and under the banner of person, I’m including how we conceptualize mind, body, being, and self-determination. […]

Melanie Yergeau

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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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