Support and Self-Advocacy: How to Meet a New Support Worker

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.

Support and Self-Advocacy: How to Meet a New Support Workern

Book Review: Communication Alternatives In Autism

“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.

Book Review: Communication Alternatives In Autism

Ask an Autistic: 10 Considerations You Should Know Now (Not Tomorrow)

 10 Considerations for the Autistic Workforce

1 Anxiety

2 Sensory Processing

3 Communication

4 Socializing

5 Misunderstood and Misinterpretations

6 Knowing What to Expect and Order

7 Feedback

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.

Ask an Autistic: 10 Considerations You Should Know Now (Not Tomorrow)

“MY AUTIST MANIFESTO”

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 AUTIST MANIFESTO”

On ‘not seeming’ autistic

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.

On ‘not seeming’ autistic

A Social Model of Neurodiversity at Work

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.

A Social Model of Neurodiversity at Work

Autism and the Arts Festival (University of Kent): 10 Things I Learned

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?

Autism and the Arts Festival (University of Kent): 10 Things I Learned

Time to rethink autism and communication

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’.

Time to rethink autism and communication

Male and Female Brain Differences – Must We Keep Doing This?

A recently released study from the university of Cambridge claims to show that male and female brains are clearly very different. In a huge study of over 600,000 people, the data obtained showed that men tend to be more analytical and ‘systemic’ while women tend to be more emotional and empathetic, thus providing clear evidence for controversial theories about the differences between male and female brains.

[…]

So, what’s wrong with this particular study? Quite a few things, as it happens. But there are also some major issues with the ways it’s being reported. Here’s a basic rundown, from my perspective.

Male and Female Brain Differences – Must We Keep Doing This? via Enough of the neurosexist bilge. It’s not all pink and blue when it comes to our brains

Institute for the Study of the Neurologically Typical

What Is NT?

Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity.

Neurotypical individuals often assume that their experience of the world is either the only one, or the only correct one. NTs find it difficult to be alone. NTs are often intolerant of seemingly minor differences in others. When in groups NTs are socially and behaviorally rigid, and frequently insist upon the performance of dysfunctional, destructive, and even impossible rituals as a way of maintaining group identity. NTs find it difficult to communicate directly, and have a much higher incidence of lying as compared to persons on the autistic spectrum.

NT is believed to be genetic in origin. Autopsies have shown the brain of the neurotypical is typically smaller than that of an autistic individual and may have overdeveloped areas related to social behavior.

http://erikengdahl.se/autism/isnt/index.html

The belief in a theory of mind is a disability

Theory of mind is declared the native domain of neurotypicals; a kind of transcendent ability that is regarded the basis for communication and, in more inflated estimations, is celebrated as the very thing that defines us as human. A lack of theory of mind, or “mind-blindness”, on the other hand, is attributed to autistics as a kind of deficit. This supposed deficit is expressed as a lack of empathy on the part of autistics, sometimes carefully parsed as a lack of cognitive empathy (the ability to know what another person is thinking/feeling), but far too often, sloppily conflated with a lack of affective empathy (the ability to feel compassion for another person).

And in pragmatic terms, autistics are indeed frequently unable to discern or know what another person might be thinking, while a neurotypical person is often able to discern what another neurotypical person might be thinking or feeling. As I have noted in previous entries in this blog, this works between two neurotpicals, not because they have insight into the thoughts or feelings of other people, but because there is a statistical likelihood that they would be thinking or feeling the same thing. They are sitting in adjacent wells, describing bits of sky that share the same cloud. Or we might say that their individual experiences of their respective beetles are similar enough that the value, utility and dangers associated with those beetles correspond sufficiently to prevent disrupting the perception that meaning, but also experience, is shared.

The belief in a theory of mind is a disability

At the intersection of autism and trauma

In speaking with participants about causes of trauma, she has heard “everything from sexual abuse, emotional abuse and horrendous bullying, to much broader concepts, like what it’s like to go around your whole life in a world where you have 50 percent less input than everyone else because you have social deficits. Or feeling constantly overwhelmed by sensory experience — feeling marginalized in our society because you’re somebody with differences.” In other words, she says, “the experience of having autism and the trauma associated with that.”

At the intersection of autism and trauma

Beyond ‘female autism’

The problem with the term ‘female autism’ is it essentialises the femininity of the experience of being autistic in this way. Yet there is nothing about this which is unique to autistic women and girls. When I first self-diagnosed I spent a lot of time reading blogs and books by other autistic women, the resonance of their words was a profound comfort to me during the uncertain time while I was waiting for a formal diagnosis. However, I would argue that this resonance wasn’t because they were female, it was because they are similar autistic people to me. Increasingly I find myself meeting men who are questioning whether they might be autistic and I find myself pointing them toward resources on autistic women and girls because this is the type of autistic person they are. This has nothing to do with their gender identity, they are not female type autistics any more than women who have been diagnosed using current tools are extreme male type autistics!

Beyond ‘female autism’