So much of what gets pathologised in neurodivergent people is just the dents and scrapes and rusty bits that come from being neurodivergent in a world built for NT’s, or even just from being human in a world that is at least as rough on humans as it is on well-used wagons.
If you blame the wagon for the dents, if you have professionals giving lectures on the distressing tendency of wagons to develop dents, if you start staging interventions on every shiny Radio Flyer you can identify to stop them developing dents while you are still dropping them off the roof and running programs to get dented wagons to polish themselves up, you know what happens? You completely miss what you are seeing. (But you build a certain number of exciting careers.)
— Read on montgomerycal.wordpress.com/2019/12/29/little-red-wagons/amp/
Many of our conflict management issues come from lack of perspective. Without proper context for our emotions, or the conflict itself, we spin out of control.
— Read on adhdhomestead.net/difficult-conversations-worse-adhd/
1. Minimizing transitions or motor planning demands
This post really began when I realized all at once that most people probably don’t arrange their entire lives so as to substantially reduce motor planning demands.
I realized one day that if other people don’t have some kind of major motivation to absolutely minimize the number of motor transitions they have to make in a day, that if those extra actions didn’t cost them anything, then the fact of their being expected would make a lot more sense.
3. Mitigating inertia and smoothing transitions
When I was a kid, I would beg to be allowed to do homework in front of the TV, and try to argue that I worked better with the TV on. I knew it wasn’t really true, but I didn’t know how to explain the way I was actually trying to help myself, which was by smoothing out the anxiety and inertia triggered by starting, stopping, and changing activities.
Let’s look at a sign of academic “laziness” that I believe is anything but: procrastination.
People love to blame procrastinators for their behavior. Putting off work sure looks lazy, to an untrained eye. Even the people who are actively doing the procrastinating can mistake their behavior for laziness. You’re supposed to be doing something, and you’re not doing it — that’s a moral failure right? That means you’re weak-willed, unmotivated, and lazy, doesn’t it?
For decades, psychological research has been able to explain procrastination as a functioning problem, not a consequence of laziness. When a person fails to begin a project that they care about, it’s typically due to either a) anxiety about their attempts not being “good enough” or b) confusion about what the first steps of the task are. Not laziness. In fact, procrastination is more likely when the task is meaningful and the individual cares about doing it well.
When you’re paralyzed with fear of failure, or you don’t even know how to begin a massive, complicated undertaking, it’s damn hard to get shit done. It has nothing to do with desire, motivation, or moral upstandingness. Procastinators can will themselves to work for hours; they can sit in front of a blank word document, doing nothing else, and torture themselves; they can pile on the guilt again and again — none of it makes initiating the task any easier. In fact, their desire to get the damn thing done may worsen their stress and make starting the task harder.
John Cassian, a monk and theologian wrote in the early 5th century about an ancient Greek emotion called acedia. A mind “seized” by this emotion is “horrified at where he is, disgusted with his room … It does not allow him to stay still in his cell or to devote any effort to reading”. He feels:
“What unsettles us is not only fear of change. It’s that, if we can no longer trust in the future, many things become irrelevant, retrospectively pointless. And by that we mean from the perspective of a future whose basic shape we can no longer take for granted. This fundamentally disrupts how we weigh the value of what we are doing right now. It becomes especially hard under these conditions to hold on to the value in activities that, by their very nature, are future-directed, such as education or institution-building.That’s what many of us are feeling. That’s today’s acedia.” From: https://www.cnn.com/2020/09/22/opinions/unrelenting-horizonlessness-of-covid-world-couldry-schneier/index.html
The personal website is a somewhat mysterious animal that lives mostly unobserved in the jungle of the Internet. A few inexperienced Internet users who live completely within the golden-walled gardens of Facebook and Google may not even be aware of the species’ existence. Other inexperienced users may consider the personal website to be either extinct, like brontosaurus, or a myth, like Bigfoot or the Abominable Snowman. The truth is that many specimens exist in the wild, but in order to successfully hunt the personal website, a hunter must know the habits of this species well.Hunting the Nearly-Invisible Personal Website via BoingBoing
Since August 2018 I have run a social network site called Friend Camp for about 50 of my friends. I think Friend Camp is a really nice place, and my friends seem to agree that it has enriched our lives. I’d like to see more places like Friend Camp on the internet, and this document is my attempt to provide some practical guidance as to how you might run a social network site like this.How to run a small social network site for your friends
The range of potential symptom profiles that can emerge from the varied deficits in social communication and behavior in ASD results in a complex behavioral presentation. The use of general, overarching diagnostic categories in complex psychiatric disorders such as ASD has often muddied genetic studies with these groups. Therefore, defining quantifiable components of the phenotype that are theoretically more closely tied to genetic vulnerability than a qualitative diagnosis helps to isolate traits for genetic and neurobiological analysis [133–135]. Investigations of component traits in biological relatives can also broaden our understanding of the complex systems that underlie social communicative behavior and offer insight into how these systems go awry in ASD. An interactive model of genetic, neurobiological, environmental, and protective factors may explain why significant deficits are present in affected children while only mild challenges are measurable in relatives. In depth examinations of the familiality of component traits provide a more complete picture of ASD’s etiology.
In contrast to this long continuing tradition of thinking of the self as just one thing, a few philosophers (like William James) and psychologists (like Ulrich Neisser) have suggested a non-reductionist alternative: that the self is more than just one thing. These pluralists about the self suggest that there are a number of selves (the social self, the psychological self, the narrative self) or that the self is complexly many things – embodied, social, psychological, cognitive, narratival, etc. I’ve suggested that the best way to think of this is to think of the self as a pattern of different processes, dynamically related to one another. These processes include those associated with bodily processes, including proprioception; and when these processes cross the threshold of consciousness, minimal, pre-reflective self-awareness; psychological, cognitive, and reflective processes, including memory, those processes associated with affect, and those that constitute our intersubjective (social) relations, our capacity to self-narrate, as well as all kinds of normative factors related to cultural practices. Feel free to add or subtract aspects that you think should be included in or excluded from the self-pattern. The important thing is that this is not simply a list of aspects. If we think of these self-relevant factors as processes that are dynamically related to one another, then we can think of them forming a dynamical gestalt, a complex pattern. And the self is what we call this pattern.
Today, I met a new PA at uni. This is a different kind of support, to add to that which I already have in place, so I was very apprehensive. What we did during the session was to put together a list of things that it’s useful to know, in order to support me effectively. This list is not exhaustive – because of the nature of support work, you often have to work with lots of people, who only get to meet you at short notice, and it’s difficult to get information to your team in advance. So it’s important that the list is something that can be given to the worker at the start of the session, and that they can look through quickly without being “over-faced”. So the list prioritises things that someone needs to know as soon as they meet me – taking into account that at this point, I’m likely to be extremely anxious, and not as competent at verbal communication as I ordinarily am. Other things I can explain as I get to know each support worker over time.
“I want people to know that not speaking is not the same as not thinking; that poor fine motor is not the same as not thinking; that impulsive actions are different than not understanding right from wrong; that poor facial affect is not the same as not having feelings; that boring people to death is denying them life, liberty and the pursuit of happiness” Ido Kedar, [p. 34]
This quote really struck me. Autistics are often deprived of consistent forms of communication, and often treated with powerfully sedating medications because of “behaviour,” which can actually be frustration at not being able to communicate, and/or apraxic motor skills deficits. Apraxia can turn meaningful intentions into disorganised and chaotic involuntary movements. It does not reflect on the person’s capability or worth. In Ido’s essay, he clearly shows frustration at not having his innate abilities respected; it would be horrific if he were treated as if he lacked those abilities, for his entire life. Perhaps the diagnostic evaluations for communication disabilities should be redesigned?
Apraxia is something I also have. It causes me to be quite wild and crazy in my movements and actions, much like author Larry Bissonnette, who after finding a communication avenue writes, “It was Larry the artist now rather than Larry the wild and crazy autistic guy” [p. 57]. Sadly, I have been denied the help I need to integrate my sensory and motor systems. Similarly, Emma Zurcher Long describes herself as laughing out loud when someone is sad, which leads to people thinking she has no empathy. This is not the case. She feels empathy very strongly, and she emotively describes this. But we autistics may appear to have inappropriate emotions in response to emotive situations, because apraxia can cause us to not act in a way we intend to. But we relate to emotions. We feel them.
The Charitable Model understanding
Disabled people have also identified the ‘Charity Model’ of disability – taking this approach, disabled people are portrayed as weak, vulnerable and needy, relying upon charity ‘handouts’.
Many of the larger disability charities continue to perpetuate this negative image of Disabled people to the general public to encourage them to continue making donations.
Much of the charity ‘industry’ is run by non-disabled people, with many charities using a substantial portion of their income to maintain the charity itself rather than support or empower the disabled people they claim to represent.
A lot of campaigning has been undertaken by disabled people over several decades to highlight and challenge the fact that the management committees and staff teams of many of the big charities did not include the disabled people they represent. “Nothing about us without us” and “Rights not charity” have been rallying cries for the disabled people’s movement in the past.
Many disabled people believe that the struggle for civil, human and legal rights and full inclusion in society should be the focus for organisations and charities, not making ‘special’ or segregated provision or treating disabled people as in need of sympathy or care. If the public feels sorry for us, disabled people would argue, we can never be equal citizens.
It’s not enough to say it is disordered. That’s merely upholding the status quo. I have said before that attempting suicide is like jumping from a burning building. Your life is on fire and crumbling around you, you feel no options are left to you other than to jump. Suicide prevention as a field often catches people, but then too often has nothing to say, but give them a diagnosis and then return them to a building still on fire. A diagnosis is not an answer in any real sense. It has nothing to say on why the building is on fire, how the fire started, if the building has any emergency exits, if the person is able to put the fire out themselves or get help to do so. It just shepherds us back to the front door and says nothing.
10 Considerations for the Autistic Workforce
2 Sensory Processing
5 Misunderstood and Misinterpretations
6 Knowing What to Expect and Order
8 Over Work/Under Work
9 Silence and Alone Time
10 Processing Spoken and Written Information
In no way ought autism hiring initiatives be taken lightly. And in no way should the reality of autistics’ true life challenges be underplayed, overlooked, or put off as an initiative for another day.
Imagine that every communication you receive is in a constantly changing code that you must unremittingly remember without writing it down. Imagine being expected to instantly decode every incoming transmission, while simultaneously encrypting and transmitting outgoing ones, with your supervisor standing next to you tapping their foot impatiently. If you falter, suddenly everyone in the room is looking at you, and someone says, “What?” and someone else whispers, “Wow!,” and rolls their eyes.
My subjective experience is that I’ve been defeated by the logistics, swamped by a flood of details that I can’t seem to collate. Even though I know that in many cases I can do the task and achieve the results, I will pay a price in stress and the attendant exhaustion and emotional backlash.
The not so funny thing about categories is that the law of the excluded middle makes you take sides. You start out by naming something in order to understand someone better, in a certain respect. The label then takes on its own reality and in trying to explain it, it will become necessary to subsume people under it. This is done on their behalf, because they can’t possibly want to be that way. Except that we can and will wind up wanting to do it our way. At that point we take your label and proceed to own it by challenging what you make of it. “We’re not insane,” we’ll say, “you are for calling us that.”
All that is natural and unavoidable but it is also decidedly unhelpful as two sides have so been created. Positions get fortified. War symbols are created. One side carries the flag of the poor children (and their poor parents) who can’t speak for themselves. The other side that of the adults who cannot stop speaking for themselves (and their poor sisters). And then mayhem: you’re either for or against autism. I’m not so much interested here in the merit of one side or the other (but this is a clue: I can’t stop speaking for myself ;-). What I’m interested in is how all of this literally affects autistic people, because it does. It does in a big way.
Some tips on access-centered event/program organizing/planning (some are mine; many I learned from other fabulous folks):