Another Spectrum

Personal ramblings and rants of a somewhat twisted mind


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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


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Thinking about the lockdown

This post isn’t so much about the lockdown itself, but about my reaction to it – specifically as an autistic person and migraineur.

According to Lloyd Geering, it is thought – specifically language – that separates humans from other higher forms of animal life. With language, we can construct alternative realities (religion, stories, metaphors etc), communicate our thoughts and ideas precisely to fellow humans for example. Without language, we’d be little different from the great apes. I’m not convinced.

Apparently most humans think in words. Take for example, the wife. I’ve asked her how she thinks. She grew up knowing only the Japanese language, but studied English literature in University. As she describes it, she thought in Japanese. For the first few years of living in Aotearoa New Zealand, she continued to think in Japanese and it was necessary to translate English conversation into Japanese, consider the response and then translate that into English to reply – a process that was quite tiring.

Eventually she started thinking in English, which is how she says she processes her thoughts today. However she still retains the ability to think entirely in Japanese and can switch from one to the other more or less on demand. Although the switch is a conscious move on her part, once the switch is made, no further effort is required until it’s time to switch again.

She finds the role of translator very tiring because of the effort of switching modes between the two languages. It becomes exhausting in very quick time. I notice that the sign language translators for our government officials have quite short stints, often requiring more than one person during a single address by the Prime Minister or other official. Mentally it’s hard work. I find this true with all communication.

Many autistic people seem to think primarily in images and it is necessary to translate those images into word patterns in order to communicate their thoughts to others. Here, some autistics will say that the effort to communicate with other autistics and neurodivergent individuals takes much less effort than when communicating with allistic (non-neurodivergent) individuals. As approximately 98% of the population is not autistic, communication with the wider community can be challenging and exhausting.

I have an almost nonexistent ability to form mental images even from quite detailed descriptions. Likewise, when it comes to recalling visual images from memory, I don’t visualise anything. I retain knowledge about what I must have seen, but more or less in the form of a wordless set of bullet points that I can translate into sentences if required.

I have in the past described my mode of thinking as thought bubbles that combine and split, similar to oil in a lava lamp. Each bubble contains a concept or groups of concepts that are constantly reforming through the splitting and recombining.

When it comes to communicating, I consciously have to go through the process of splitting a concept into groupings of progressively smaller ideas until they reach the size of paragraphs. From there it’s necessary to construct sentences, at first without words, and then to choose the necessary components of language in order to communicate in written or spoken form.

I reverse the procedure when taking in what someone has said or written. While the metaphor of bubble seems appropriate when it comes to levels approximating paragraphs and smaller, it is less appropriate for “higher” levels. They are more like clouds, having no clearly discernible boundaries and can combine and split is ways where it’s not possible to precisely know when they split or join.

So what has any of this to do with the COVID-19 lockdown?

Because the translating of thought clouds into words requires effort, isn’t instantaneous and is somewhat imprecise, I usually spend considerable effort practising the translation of ideas into words and refining them so that they will be intelligible to allistics. When I’m happy with it, I can store it away in memory from where I can recall and recite it, rote form, when appropriate.

Nearly all nonconsequential communication – small talk – comes from this memory bank of prepared sentences, both for what I say, and for matching input from others. Under normal circumstance, I need to constantly refresh what is stored, otherwise the content fades over time.

Since the lockdown, the necessity of, and demand for, using prepared sentences and phrases has diminished. So much in fact, that I notice I am not in a state of constantly refreshing existing ones or preparing new ones just in case they’re needed. The outcome is I feel less stressed. I don’t feel I’m in a constant state of rehearsing for a performance commonly referred to as life. Mentally, I feel relaxed, and for me it is quite a novel experience.

For many migraineurs, stress can be one of the triggers for a migraine attack, and I suspect in my case it’s a primary cause. Since the lockdown, the frequency and severity of migraine attacks has diminished significantly.

Particularly noticeable since the lockdown is that often a migraine attack goes through just the aura phase, with a shortened or nonexistent prodrome phase, acute phase (the actual headache and associated severe symptoms), and postdrome phase (the migraine hangover).

I appreciate that for most people, isolation and the lack of communication opportunities can be distressful and can cause anxiety and stress. On the other hand, I’m relishing it. Perhaps when this pandemic is over, I should consider becoming a hermit 🙂


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wikipedia.org Article for Naoki Higashida

This is one of a number of articles I intend to re-blog opposing Wikipedia editorial policy that promotes “the complete erasure of living, breathing, autistic human beings and their experiences from the world’s largest encyclopedia”.

The Wikipedia.org article for Naoki Higashida was removed. In protest, The Aspergian is publishing it on our site.

Source: wikipedia.org Article for Naoki Higashida (3 minute read)