Functioning

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In Yergeau’s text, the autistic or neuroqueer subject is also perpetually out of sync – developing at a supposedly delayed rate; moving through the world in inscrutable ways; exhibiting a sociality that does not satisfy non-autistics; potentially being already out of time for redemption.

Crucially, being out of step with the idealized tempo situates autistic individuals under the surveillance of parents, physicians, employers, policymakers, and educators, who conceive of autistic bodies as perpetually requiring intervention by allistic others.

Yergeau writes that “regardless of degree, low-functioning and high-functioning bodies are effectually nonfunctioning bodies,” such that “no autistic person is ever high functioning enough, much like no autistic person is ever low-functioning enough.”

Heather Thomas

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Functioning means “how well you do”. It is not an answer, it is a line of questions. How well you do what? How well you do when? How well you do in which circumstances, in which environments, with which people? Who decides what well means? Who decides which doing matters and which doesn’t? How do you measure well? Who do you measure against? Why are you measuring at all?

Why do you need to know?

Functioning is not a word. It’s not a sentence. It’s not even a paragraph. Functioning requires a lifetime of context, it requires testing and experimenting, it requires caveats and exceptions and constant amending. Functioning is not something you can capture in a single phrase.

Natasha

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Next (Part B)

Atmosphere – Rays (Part 1)

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[…] 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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Next

Atmosphere – Streaks (Part 1)

Previous

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When we describe autism in terms of binaries, discourse communities, or circles, we construct a very unreal, [very black and white,] very us/them reality. […]

The typical autism essay, ironically, often proclaims that autism cannot be placed in a box, all the while concurrently placing autistics in boxes – LFA, HFA, mild, severe, verbal, nonverbal, etc.

And, I would also posit that autism should not be (because it cannot be) contained within tidied-up circles, which, despite being round, are themselves boxlike.

Discourse community theories fail to account for how these circles get created, get named, get claimed, get dismantled. In effect, discourse communities largely render their users passive.

In “Hybrid,” Bizzell claims,

These elements [discourse conventions] are so powerful that the discourse could be said to take on a life of its own, independent of individual participants; it could be said, even, to ‘create’ the participants that suit its conventions by allowing individuals no other options if they wish to be counted as participants.

Per this logic, I have been passively constructed into autism – by discourse. I have been passively constructed into aspiedom – by discourse. My other autistic commonplaces – or identity markers – have also been shaped or spawned by discourses: stimdom, speechdom, lack-of-eye-contactdom, patterndom, take-everything-literally-and-then-somedom.

But discourse alone can’t name these things, can’t claim these things. These facets of me, the diverse facets of other autistic individuals, of human individuals – autistic cousins or not – only fit within these circles because someone has squished them there, has proclaimed generalization as the new world order.

Low-functioning autism exists because the people who write the typical autism essay say it does: they make the circles; the circles themselves don’t independently create themselves; the circles aren’t material objects that exist or breathe or birth or contain people, all neatly sorted; the circles have human help. While I like to objectify humans and categorize stuff [very much], circles alone just don’t do the trick.

Melanie Yergeau

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There are many autistic people whose best method of communication is nonverbal. By which I mean, not speech, not writing. […]

Most people don’t know this because the current theories of autism all involve us being terrible at nonverbal communication. By which people mean, terrible at one specific kind of nonverbal communication that most nonautistic people are good at.

So for many of us – nonverbal communication, and the world of things outside of words, are our best way of communicating. Whether we can also use words or not. […]

It’s true that many people who are thought not to be able to use or understand language, actually are. And it’s terrible that they are overlooked. But in their desire not to overlook such people, many people claim that all disabled people who can’t communicate through speech fall under this umbrella. And that’s simply not true. In order to communicate with people who will never use words, you have to learn their language.

Mel Baggs

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‘Autism steals their voices.’

The idea of “voicelessness” presents itself as a convenient vehicle to get from autism to (living) death.

Voicelessness, here, does not refer primarily to literal variations of mutism […]

To be a voiceless autistic person does not entail an incapability of using language, but rather, an all-encompassing credibility gap.

Are autistic people, after all, expressing themselves, or merely their symptoms? Are they themselves expressing, or is autism? […]

When autism speaks, autistic people do not.

Voices here are only reserved for native speakers of a particular kind of symbolic language.

This language assumes and creates a normative, human subject, one who both comprehends and is comprehensible to other humans.

The faith […] is put in a shared, normative language, as a tool to fathom oneself and other people […]

This mechanism, while steeped in hyperbolic doubt, is intertwined with an essentialist humanism.

If the symbolic connects all humans to a network of intelligibility, the subjects who fall outside of this network must not be fully human.

Anna N. de Hooge

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Next

Atmosphere – Snowflakes (Part 2)

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[…] 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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