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):
What happens to a community of people who have been raised with sensation of constant, looming danger, of being fundamentally wrong in the way we love and express ourselves? What impact might that collective trauma have upon our bodies and spirits?
Scholars of the brain are fond of saying “what fires together, wires together,” which refers to the brain’s tendency to form neural networks (pathways in the brain that form certain thought, feeling and behavioural responses) that become stronger and stronger every time they are used. Trauma theory holds that traumatized inviduals — and, I would hypothesis, queer and trans community as a whole — have well-worn neural networks shaped around the deeply held physical sensation that we are constantly in danger, that we are bad and unloveable, that others are untrustworthy and violent. Every time we are abused, discriminated against or neglected, those neural networks become stronger, while our neural networks associated with safety and loving relationships atrophy. We become physically less capable of imagining a world where being with others is not synonymous with being unsafe.
“In addition, a widespread use of NIPT as general screening may induce ‘eugenic’ use, even when the state is not involved. The adding up of a lot of individual choices to the ‘acceptability’ of aborting certain kinds of embryos or fetuses brings forward a societal phenomenon, which resembles a kind of eugenics in the search for a ‘perfect child’.”
People often ask whether autism (or another neurodivergent condition) is a disability. I’d argue that it is more helpful to ask whether autistic people are disabled (to which my answer would be: in most cases, yes). It may seem a semantic distinction, but it is important: it locates the disablement not in the autistic person’s brain, but in the society they live in and the way the individual and society interact. Autism is not our disability: it may be an impairment, a difference, or some combination. Our disability is the difficulty that arises in our interaction with the specific society in which we live.
These burgeoning, fragile, necessary autistic spaces may be the foundations that can help explorations to, and with, allies, companions, partnerships. However power imbalances within and outside these spaces must be acknowledged and respected. Being able to be there was a privilege not available to all. (That shouldn’t be taken to mean that the path to being there wasn’t differently hard for so many of us). It is always better to be done “with” than “to”. Luckily autistic people (can have) strengths in clear, direct, honest communication. What could be more useful (& endangered) in a post-truth world?
That me sitting here having a conversation in a way that reads as baseline normal to you is so high-energy that I’m going to start to break down from it in about half the time as you and have to go home and collapse. That to you that’s just how humans work and to me it’s like performing an extremely high-level game of mental and physical coordination.
You don’t have to look far to find derogatory descriptions of the communication of autistic people. Terms such as ‘disorder’, ‘impairment’, ‘deficit’ and ‘dysfunction’ abound in the research literature which, when you drill down into it, offers multitudes of negative conceptualisations of the ways that autistic people do, or don’t express themselves. In simple terms, autistic people are considered impaired whether they are speaking, or not speaking, for the words they choose, or don’t choose, for talking too quickly, or too slowly, for doing so at the wrong time, in the wrong way, or in the wrong place. Indeed, as I wrote in 2018, when I explored the intersection of autistic communication with noise and silence in schools, autistic people are simply considered to be making ‘the wrong kind of noise’.