Autism: How to be normal (and why not to be)

This being autism awareness month, you’ll probably see me posting more articles about autism than normal. I make no apologies for doing so.

The following heartfelt Youtube video is from a TEDx presentation by a fellow autistic, Jolene Stockman. Her experiences very much parallel my own, apart from learning to drive (I found it easy and enjoyable) and the age at which being autistic was discovered (60 in my case).

Disturbed dawn

By nature, I’m a night owl. I’m seldom ready for bed before midnight, and even then it make take a few hours before sleep overtakes me. During that time I find myself replaying conversation scenarios – sometimes recent conversations, occasionally long past conversations, but mostly I find myself rehearsing potential conversations. These fall into two very distinct groups: those that are necessary, and those I would like to pursue should the opportunity arise.

In the necessary category are items of small talk which for neurotypicals seem necessary to normal social interaction. Also in this category are those conversation threads one undertakes in commerce, and routine conversations with friends and family. Even much of the conversation with the wife falls into this category.

It’s not sufficient to rely on the bank of scripts I have stored away that can be recalled more or less on demand, as these can be used only in short bursts: comment, reply, comment, reply. Beyond that they’re not likely to be particularly fruitful. So in the hours I’m awake and every sensible person is sleeping I rehearse the many possible ways a scenario might develop. I practice being serious, flippant, casual, precise, vague, humourous, so that I can call on the appropriate script when needed.

And so it was at 5:00 am this morning when I realised I had spent most of the night rehearsing a range of conversation threads that might pop up when the wife and I join with family and friends to celebrate the (secular) festive season on Christmas day. The dawn chorus was just commencing so I made a conscious effort to cease rehearsals and instead bath in the glory that is dawn – even if the sun didn’t shine.

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.

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

Freedom!!

Not that I’m looking forward to it.

COVID-19 has been eliminated in Aotearoa New Zealand.

In less than half an hour, COVID-19 restrictions will be lifted as we drop to Alert Level 1. Apart from our borders remaining tightly closed we’ll be back to pre-COVID conditions. We’ll be able to cram ourselves by the thousands into every type of venue imaginable and we can shake hands, hug and hongi to our heart’s contents with loved ones and total strangers if we are so inclined. I’m not.

One characteristic that I and many other ausistics have is an aversion to large gatherings, physical contact with other people and the need for greater personal space than many neurotypical people find acceptable.

I’ve never felt more comfortable around other people that I have during the past 70 days of the various COVID-19 alert levels. All alert levels have mandated a 2 metre spacing between people if they didn’t belong to the same social bubble.

I’m going to try to maintain at least one metre of social distancing. I find that anything less than that raises my level of discomfort. While I don’t think many people will think it odd to begin with, I wonder how long it will be before my minimum social spacing is deemed unacceptable by the community.

I’ve really enjoyed the occasional coffee and cake in a local eatery over the past month as the nearest person would be seated two metres away, and all food was delivered to the table instead of me having to dance around other patrons all trying to grab items from the display cabinets. What I have I to look forward to?

However, I appreciate I’m an exception and just about everyone else is looking forward to join the throngs and crowds, and get up close and personal to friends and strangers alike. I’m pleased for you.

But please be a little understanding if I take a step back when you take a step forward.

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.

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

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.

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

The “Severe Autism” Concept is Behaviourism’s Final Stand

Neuroscience threatens the foundational theories of behaviorism, and the ABA lobby has tried hard to suppress the fact that behavior is abuse for apraxia.

Source: The “Severe Autism” Concept is Behaviourism’s Final Stand (5 minute read)

wikipedia.org Article on Sue Rubin

This is one of a number of articles I am linking to in opposition to Wikipedia editorial policy that promotes “the complete erasure of living, breathing, autistic human beings and their experiences from the world’s largest encyclopedia”.

Sue Rubin’s page on Wikipedia was removed due to discrimination and vandalism. In protest, The Aspergian is reposting and editing the pages of nonspeakers.

Source: wikipedia.org Article on Sue Rubin