Another Spectrum

Personal ramblings and rants of a somewhat twisted mind


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Agreeing to disagree – opinions vs realities — unwrittengrace

As someone who belongs to a distinct minority that has been pathologised as being “broken” more so than accepted as different but equal, the post below speaks very much to my condition (Quakerspeak for “my experience is very similar’). Thank you gracenotes17 for your contribution to this very important topic.

I have often heard people say that it’s important to be able to voice your opinion and disagree with others’ without being accused of hate speech. To an extent, I agree. I think everyone has a right to voice their opinion, and when people are able to do so respectfully, it can be an opportunity […]

Agreeing to disagree – opinions vs realities — unwrittengrace


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Seeing is believing

Like everyone else on this planet (perhaps with the exception of the previous POTUS) I am not perfect, nor was I born that way. Today I want to focus on some imperfections I was born with. I’m using “imperfections” here in two different ways.

  • Those traits and characteristics that society deems as flaws disabilities, unacceptable or a nuisance to deal with
  • Those traits and characteristics that one feels about oneself that are flaws, disabilities, unacceptable or a nuisance to deal with.

Often times, what one perceives as an imperfection may not be deemed so by society, and of course the opposite is true – what society deems as an imperfection may not be deemed so by oneself.

In my own case an obvious example is autism. Almost certainly, no one in any profession would have considered I was autistic until perhaps the 1990s and the condition became better understood. I wasn’t diagnosed as such until 2010. My family had always been very accepting of my “quirkiness”, but the rest of society wasn’t. I was cajoled, teased, bullied, reprimanded, punished and violently assaulted for being “different”.

I perceive the world differently at many levels compared to non-autistic people, and I may post more on how growing up as an undiagnosed autistic affected my life at another time, but today I want to concentrate on the imperfections of my eyesight and vision, and how those have been perceived by myself and others.

I was born with both myopia and astigmatism although neither myself, family, friends or school teachers realised it. It was finally my music teacher who realised I was unable to read music notation in advance of where I was playing that lead to my first “real” eye examination when I was 12 years old.

Sure, for the previous seven years, I had passed the usual eye test at school where one reads an eye chart at a prescribed distance.

Tests were carried out on the entire class by putting all the students in a line and then taking the student at the front of line through the test. Not being particularly assertive, I usually found myself near the back end of the line. Alternatively, we sat at out desks and were called up in alphabetical order by family name. Either way I was always in the last quartile of the class to be tested.

I don’t recall how far through the chart we were required to go, but I think it was only as far as the line for 20/20 vision. I always passed the test with flying colours. I could rattle off the letters as fast as the best of the class.

The problem was that I couldn’t read the chart apart from the very top letter, and even that was very marginal. So how could I pass every time? By the time it was my turn to read the chart, twenty or more children had already read it in my presence. First with one eye and then with the other. I had heard the chart called out 40 or more times at varying speeds. More than enough repetitions for me to have memorised it.

I don’t recall whether the memorisation was intentional or not, but I do recall that the class consensus was that “failing” wasn’t a desirable outcome, just like failing any other test wasn’t. So everyone including myself did our best to get a “good” pass. I felt good when the adult conducting the test would say something like “Very good, well done Barry”. It was praise I seldom received from anyone other than my parents.

If I had understood how bad my eyesight was, what I was missing and how corrective lenses could change my perception of the world around me, I would have had no qualms about failing the test. Such is life. It took a rather crabby and domineering music teacher to recognise my disability.

Strange as it may seem now, I had no idea that my eyesight was so poor. In fact I had the perception that it was rather good, and I wasn’t the only one. This came about because whenever we travelled along the highways I was able to recognise roadside hoardings/billboards well before either the driver or my fellow passengers. In hindsight, the explanation is simple. I had learnt to recognise all the signs not by the wording or images but by the combination and pattern of colours, which in those long forgotten days (the 1950s) tended to be consistently the same year on year.

As a humorous aside, it wasn’t until after I had my first set of glasses that I discovered that the name of one of the most ubiquitous signs at that time had been been assigned an “alternative” name by the family – an in joke I didn’t discover until I could read the wording myself: Cough Cough and Hammer was actually Gough Gough and Hamer.

I recall the sudden panic, almost terror that I experienced the first time I walked out of the optometrist’s shop wearing my new glasses. As the shop door was closing behind me and I looked ahead, I suddenly and simultaneously took a step backwards into the door and ducked. It literally felt like the world was being thrown at my face. The clarity of the detail of the shop fronts on the opposite of the road felt like they were a mere 6 inches (the NZ switch to metric measurements was still decades away) in front of my face.

It was perhaps the most disorienting experience of my life at that time. I was frozen to the spot. I don’t know how long I stood in that doorway ducking pedestrians and cars that seemed to be inches away, but were in fact yards away.

It seems rather odd now that it never occurred to me that the very obvious solution to my situation was to remove my glasses. An optometrist employee recognised my dilemma and pulled me back inside the shop and removed the glasses. After some quick instructions not to put on my glasses until I was in a small room that I was familiar with and to work up to bigger spaces from there, I was sent on my way.

As much as I wish my new glasses improved my life, they didn’t.

A characteristic of many people on the autism spectrum is the inability to subconsciously filter information arriving via the senses. For example in a crowded room where several conversations are taking place, most people are able to ignore conversations they are not participating in. Other conversations will only reach their conscious awareness when there’s a noticeable change such as in volume, pitch or body language – for example when an argument starts.

Most people have the ability to ignore conversation threads they are not participating in. I can’t. A simple analogy might be the example of being in a group conversation when all participants start addressing you all at the same time, at the same volume but all on different topics. I think the resultant confusion will cause most people to put their hands up and demand that the participants speak one at a time. That’s the situation I face all the time. ALL.THE.TIME!

It turns out that my ability to filter out visual stimuli as that same as my ability to filter out aural stimuli. I can’t. I found the bombardment of new visual information overwhelming and exhausting. Previously trees were largely blurry blobs of green. I could distinguish individual leave only at relatively close distances, so perhaps no more than a hundred or so leaves at any one time. Suddenly I was seeing thousands, hundreds of thousands, perhaps millions of leaves all at once – every one a slightly different size, shape and colour, and all moving independently in the breeze. I didn’t know how to process all this new information.

Suddenly telephone poles and power poles had distinguishable cross arms, insulators of various colours but seemingly on no particular order or pattern. I could see the wires and the patterns they wove overhead. I could actually make out birds sitting on the wires or on rooftops, and even identify the species – something I had previously only been able to do from the pages of a book.

And speaking of books, whereas previously there was only a small area around the word I was reading where the shape of individual words could be distinguished easily (I recognise words by their shape as much as I do by the letters within them), suddenly every letter on the page became individually identifiable, every one of them yelling in unison “Read me NOW!”

Wallpaper patterns now continued right around the room instead of being discernible only in near proximity. On large buildings, all the individual windows could be seen. What’s more they formed regular patterns, and any break to that pattern became a distraction I couldn’t avoid being aware of. The same with pathways. Joins formed patterns that extended into the distance and any spot where the pattern was disturbed jumped out at me. I couldn’t help but notice it.

Never before in my life had been in a situation where I could distinguish the facial features of more than five or six people at one time. Now I could see all the features of everyone in the classroom ALL AT THE SAME TIME. Just too much information to handle. It didn’t help me with facial recognition, but it did allow me to apply the rules I used for identifying individuals at greater distances than previously. Crowds became a confusing collection of

Tiled roofs became a collection of thousands of individual tiles, many of which had individual characteristics I couldn’t help noticing. I could see the corrugations on corrugated iron roofs, and the rows of nails holding them down. Disturbances in the rows (a nail missing, irregularly spaced or out of alignment) shouted out “Look at me!”

Sixty years on and and the same distractions still occur. What I have learnt is how to consciously push them into the background. Over the years I have got better at doing it and it probably takes less effort to do so. There are still times, especially leading up to and during a migraine where I find all the visual information overwhelming. It’s nice to be able to remove my glasses and move into a visually gentler and less harshly chaotic world where I’m not assaulted by detail.

While I mostly appreciate the details I seem to notice when no one else does, there are times when I wish I could simply not notice them in the first place – just like everyone else.


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A truth about autism

Very simple fact:

So often autism is treated as a childhood disorder. It is neither a condition unique to children, nor a disorder.

There are many more autistic adults than there are autistic children. For every autistic child, there are at least three autistic adults. As the general population ages so too will the autistic population.

I make a distinction between disorder and disability. And a great many of the disabilities attributed to autism are in reality, social constructions created by non-autistics that are punitive when we are our true selves. Don’t forget that American psychiatrists didn’t remove all references to homosexuality as a disorder until 1987. In time, autism too will no longer be considered a disorder.


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WHAT IS AUTISM?

In yesterday’s post I quoted from and linked to an article that argues that the pathology paradigm is a cultural value judgment and not a objective scientific conclusion. So if autism is not a disorder, what is it? Most online scientific and medical literature still use the pathology paradigm, as do most sources within the autism community(a) and so are of little help when looking at what autism really is.

To gather a more accurate description one needs to look at the literature from the autistic community(b). The “problem” with following this course of action is that most descriptions are based on personal experience and are therefore subjective in nature rather than being objective in a scientific vein.

(a)Autism community: allies of autistic people; caregivers of autistic people; extended family of autistic people; professionals who work with autistic people; anyone who thinks they know anything about autism.
(b)Autistic community: autistic people.

And here’s why it’s a problem: The experience of every autistic is different. The picture I paint to describe what autism is for me will be different from the picture painted by another autistic about their experience. Some of my experiences might event contradict those of another autistic. Many non-autistic people have an issue with this. They see inconsistencies, discrepancies that they interpret as “nonsense”, “bullshit”, “you’re making it all up”. And we’re the ones who are supposed to have rigid forms of thinking??

Comprehensive descriptions that include autism in all its variations and follow the neurodiversity paradigm are few and far between, but I find the following from the NEUROCOSMOPOLITANISM blog one of the better descriptions of what autism is.

WHAT IS AUTISM?

Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.

Autism is a developmental phenomenon, meaning that it begins in utero and has a pervasive influence on development, on multiple levels, throughout the lifespan. Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals.

According to current estimates, somewhere between one percent and two percent of the world’s population is autistic. While the number of individuals diagnosed as autistic has increased continually over the past few decades, evidence suggests that this increase in diagnosis is the result of increased public and professional awareness, rather than an actual increase in the prevalence of autism.

Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly.

The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience.

Autism is still widely regarded as a “disorder,” but this view has been challenged in recent years by proponents of the neurodiversity model, which holds that autism and other neurocognitive variants are simply part of the natural spectrum of human biodiversity, like variations in ethnicity or sexual orientation (which have also been pathologized in the past). Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact.

What Is Autism? – NEUROCOSMOPOLITANISM, March 1, 2014


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Autism and the Pathology Paradigm

I was late in being diagnosed as being on the autism spectrum – I was 60 years old at the time. At first I tried to prove that I was not autistic, but when that failed I reluctantly accepted that I had a disorder. It took quite a few years to realise that autism is no more a disorder than diversity in sexual orientation or gender identity are.

The following paragraphs from Autism and the Pathology Paradigm summarise my current understanding. You can read the full article by clicking the link in the citation at the foot of the quoted text below.

The choice to frame the minds, bodies, and lives of autistic people (or any other neurological minority group) in terms of pathology does not represent an inevitable and objective scientific conclusion, but is merely a cultural value judgment. Similar pathologizing frameworks have been used time and again to lend an aura of scientific legitimacy to all manner of other bigotry, and to the oppression of women, indigenous peoples, people of color, and queer people, among others. The framing of autism and other minority neurological configurations as disorders or medical conditions begins to lose its aura of scientific authority and “objectivity” when viewed in this historical context – when one remembers, for instance, that homosexuality was classified as a mental disorder in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) well into the 1970s; or that in the Southern United States, for some years prior to the American Civil War, the desire of slaves to escape from slavery was diagnosed by some white Southern physicians as a medical “disorder” called drapetomania.

At this time, sadly, the pathologization of autistic minds, bodies, and lives still has not been widely recognized – especially not within the academic and professional mainstream – as being yet another manifestation of this all-too-familiar form of institutionalized oppression and othering. The academic and professional discourse on autism, and the miseducation on autism given to each new generation of professionals, remain uncritically mired in the assumptions of the pathology paradigm. And since bad assumptions and unexamined prejudices inevitably become self-reinforcing when mistaken for facts, this entrenchment in the pathology paradigm has kept autism-related theory, praxis, and education stuck in a self-perpetuating cycle of ignorance and bigotry.

Autism and the Pathology Paradigm – NEUROCOSMOPOLITANISM June 23, 2016


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They Were Wrong — Speaking of Autism…

Too often, those who are neurodivergent are written off and denied the opportunity to shine. It takes an exceptional amount of determination and good fortune for most autists to break through the barriers that society, in its ignorance, places in front of them. Success stories are rare, not because it’s an innate characteristic of autism but because society has decided to write off autists as failures, rejects, and broken, even before formal education commences. So I rejoice when a kindred spirit is able to demonstrate how wrong the system is. Here is the success story of one autist who, with just the right amount of determination, support and happenstance, has proven that the system and society are indeed wrong.

Congratulations Quincy!!

Well, folks, it’s official. I am a high school graduate! Well, technically I’ve been “graduated” since May, but the school held the actual ceremony this week. Despite the delay, I walked across the stage and got my diploma last Thursday on the school’s football field. I think that for everyone a high school graduation is […]

They Were Wrong — Speaking of Autism…


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Ways society gaslights and stonewalls autistic people #4

Taken from 50 Ways Society Gaslights and Stonewalls Autistic People. Visit Neuroclastic if you prefer to see all 50 ways in one bite. Otherwise, expect to see one more way in which we are gaslighted each day over a period of seven weeks.

Autistic people, adults and children, are infantilized, gaslighted, and manipulated regularly by society– individuals and institutions.

Gaslighting is a form of psychological manipulation that seeks to sow seeds of doubt in a targeted individual or in members of a targeted group, making them question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, it attempts to destabilize the victim and delegitimize the victim’s belief.

Wikipedia

Note: Some of these may overlap, and some may not fit squarely within the definition of gaslighting; however, all contribute to the way in which society functions like a narcissistic parent with regards to how autistic people are perceived and treated.

4. ABA “therapy”

When ABA therapists claim that ABA therapy for 40 hours is not exhausting for small children because it’s “just play,” when social play can be beyond-exhausting over extended periods of time for autistic kids.

Neuroclastic

Just because Autistic kids often don’t play in a way non-autistic kids do doesn’t mean they’re not playing. And by being forced to “play’ in a way non-autistic kids do – especially social play – it is no longer play. It becomes hard work and eventually beyond endurance. Such treatment of a typical child would be considered abuse, but somehow it’s okay to subject autistic kids to this sort of treatment.


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Ways society gaslights and stonewalls autistic people #3

Taken from 50 Ways Society Gaslights and Stonewalls Autistic People. Visit Neuroclastic if you prefer to see all 50 ways in one bite. Otherwise, expect to see one more way in which we are gaslighted each day over a period of seven weeks.

Autistic people, adults and children, are infantilized, gaslighted, and manipulated regularly by society– individuals and institutions.

Gaslighting is a form of psychological manipulation that seeks to sow seeds of doubt in a targeted individual or in members of a targeted group, making them question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, it attempts to destabilize the victim and delegitimize the victim’s belief.

Wikipedia

Note: Some of these may overlap, and some may not fit squarely within the definition of gaslighting; however, all contribute to the way in which society functions like a narcissistic parent with regards to how autistic people are perceived and treated.

3. Empathy

When they claim to have empathy and that we don’t, but then only measure empathy in NT ways like eye contact or understanding NT behavior.

Neuroclastic


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Ways society gaslights and stonewalls autistic people #2

Taken from 50 Ways Society Gaslights and Stonewalls Autistic People. Visit Neuroclastic if you prefer to see all 50 ways in one bite. Otherwise, expect to see one more way in which we are gaslighted each day over a period of seven weeks.

Autistic people, adults and children, are infantilized, gaslighted, and manipulated regularly by society– individuals and institutions.

Gaslighting is a form of psychological manipulation that seeks to sow seeds of doubt in a targeted individual or in members of a targeted group, making them question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, it attempts to destabilize the victim and delegitimize the victim’s belief.

Wikipedia

Note: Some of these may overlap, and some may not fit squarely within the definition of gaslighting; however, all contribute to the way in which society functions like a narcissistic parent with regards to how autistic people are perceived and treated.

2. Late blooming

Not acknowledging that many of us grew up in environments that weren’t conducive to fostering our talents ended up as late bloomers, then assuming we’re Né’er-do-wells or we’re unmotivated or unambitious. We just haven’t bloomed yet, and it’s a profound difference… but when we do bloom, look out.


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Ways society gaslights and stonewalls autistic people #1

Taken from 50 Ways Society Gaslights and Stonewalls Autistic People. Visit Neuroclastic if you prefer to see all 50 ways in one bite. Otherwise, expect to see one more way in which we are gaslighted each day over a period of seven weeks.

Autistic people, adults and children, are infantilized, gaslighted, and manipulated regularly by society– individuals and institutions.

Gaslighting is a form of psychological manipulation that seeks to sow seeds of doubt in a targeted individual or in members of a targeted group, making them question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, it attempts to destabilize the victim and delegitimize the victim’s belief.

Wikipedia

Note: Some of these may overlap, and some may not fit squarely within the definition of gaslighting; however, all contribute to the way in which society functions like a narcissistic parent with regards to how autistic people are perceived and treated.

1. Sensory differences

Telling us that our sensory differences are “no big deal” and that we just need to “be resilient” and learn to deal with it. They assume their brains are the same as ours and assume we can habituate when we can’t, so instead force us to be in awful environments to try to “habituate us” to the stimulus. Which is just further traumatizing us. Thinking they get to decide what is loud, bright, painful, or tastes funny.

Neuroclastic