STOP Autism Research (There’s a BETTER Way)

The video says it all. There’s nothing more I need say. (Turn on closed captions if you have a hearing disability)

Twenty-seven in the shade

Summer is just a few days away. In this part of the world summer “officially” starts on the first day of December. I’m already looking forward to late autumn.

A characteristic commonly shared amongst autistics is hyposensitivities and hypersensitivities when compared to non-autistic folk. Depending on the senses involved being hypo or hyper can be an blessing or a curse. For example I’m mostly oblivious to low and moderate levels of pain. It’s not until it reaches the level one experiences of momentary pain when slamming a car door on a finger, or the ongoing pain when the body unsuccessfully attempts to eject kidney stones, or when attempting to move muscles affected by polio that I experience “real” pain. Breaking my arm or gashing my foot exposing the bones resulted in curiosity about the outcome more than any conscious sense of pain. In fact I experience more pain from the noise of a typical shopping mall or from lighting effects commonly found in modern forms of entertainment.

I do not like warm weather. I have a narrow band of “comfortable”. Below 18℃ (64℉) I start to feel the chill, while anything above 24℃ (75℉) feels unpleasantly warm. As I age, the level of discomfort I experience increases when the temperature goes outside my comfort zone.

As temperature drops, it’s a simple matter of adding an extra layer of clothing to maintain a level of comfort although I have to be careful to avoid spontaneous “attacks” of Raynaud’s syndrome in my fingers and/or toes, which can be very painful as the symptoms wane. Coping with heat is a different matter.

Take today for example. Our indoor/outdoor temperature gauge, shows the outside temperature as being 27.2℃ (81℉) in the shade and inside as being 26.4℃ (79.5℉). I find myself extremely restless, pacing about aimlessly, unable to concentrate much on anything apart from wishing it was cooler. If I had my way, I’d close the windows and doors and switch on the heat pump, and allow it to maintain its default setting of 22℃ (72℉) as it does during the colder months of the year.

Unfortunately The Wife has other ideas. She relishes such temperatures. My suggestion that we turn on the heat pump resulted in a very emphatic “No!” What happened to so called neurotypical empathy? So in order to maintain domestic harmony I find myself wandering aimlessly about our home, keeping out of her line of sight as she finds my pacing “annoying”.

Postscript

The Wife acknowledged my efforts not to annoy her in my discomfort and provided the perfect meal for a day such as today – somen (cold Japanese noodles).

Musical Monday (2021/10/25) – Mr Tambourine man

Back in the late 1960s I was a young adult, still in my late teens, but unlike most of my peers I had no friends or social life – in fact I found interaction with typical teens and young adults perplexing and at times terrifying. I had no dreams or aspirations, but no regrets or fears either. I simply existed. My life was quite empty.

In hindsight, this seems to be to fate of many young autistic males, although it would take more than another forty years before I was to discover that I am autistic. I wasn’t unhappy, but being a social outcast, and knowing one is but not knowing why did create a longing that I vaguely felt somewhere within.

I have quite high levels of alexithymia and aphantasia. I lack an awareness of emotions in others and myself, and I am unable to conjure images in my mind. This is where music comes in. Some music causes me to feel what I assume to be emotions. Occasionally music may stimulate a vague mental image. Very rarely a piece of music may do both. This cover version of Mr Tambourine Man by Melanie (Safka) is one such piece.

I’m not sure exactly when the cover version of Mr Tambourine Man by The Byrds landed on the hit parade, but I guess it was around 1965 or 1966. I had no interest in it at the time, and still don’t. Then at the end of 1968 Melanie released her cover version on her album Born To Be. I definitely took notice of that version. I could feel the hair in the back of my neck rise, especially as she sings the last verse starting from “And take me disappearing through the smoke rings of my mind“,

It’s an imagery I can actually see, albeit as a black silhouette on a misty grey background or perhaps as a monochrome sand painting or perhaps as a slightly abstract pen and ink drawing. It’s difficult to describe as I can only see it while the song is being played. I can see the frozen leaves and the haunted frightened trees. I even sense the fear of those trees.

When I first heard Melanie sing the words “With all memory and fate driven deep beneath the waves let me forget about today until tomorrow“, I felt an instant connection. Perhaps I was a recognition that my life at that time was one of near solitude and I needed more. Whatever it was, there was a connection to the song and the singer in a way that I had never felt before. And still today, more than fifty years later, Melanie’s version of this Bob Dylan song moves me like no other does.

Enjoy!

Mr. Tambourine Man, sung by Melanie, composed by Bob Dylan

Lyrics to Mr Tambourine man composed by Bob Dylan

Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you

Though I know that evening's empire has returned into sand
Vanished from my hand
Left me blindly here to stand
But still not sleeping
My weariness amazes me, I'm branded on my feet
I have no one to meet
And the ancient empty street's too dead for dreaming

Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you

Take me on a trip upon your magic swirlin' ship
My senses have been stripped
My hands can't feel to grip
My toes too numb to step
Wait only for my boot heels to be wanderin'
I'm ready to go anywhere
I'm ready for to fade
Into my own parade
Cast your dancing spell my way
I promise to go under it

Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you

Though you might hear laughin', spinnin' swingin' madly across the sun
It's not aimed at anyone
It's just escapin' on the run
And but for the sky there are no fences facin'
And if you hear vague traces of skippin' reels of rhyme
To your tambourine in time
It's just a ragged clown behind
I wouldn't pay it any mind
It's just a shadow you're seein' that he's chasing

Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you

And take me disappearing through the smoke rings of my mind
Down the foggy ruins of time
Far past the frozen leaves
The haunted, frightened trees
Out to the windy beach
Far from the twisted reach
Of crazy sorrow
Yes, to dance beneath the diamond sky with one hand waving free
Silhouetted by the sea
Circled by the circus sands
With all memory and fate
Driven deep beneath the waves
Let me forget about today
Until tomorrow

Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you

Not knowing what you don’t know.

Lyric Holmans has released a Youtube clip explaining why she finds people overwhelming. You can view the clip and read a transcription on her blog. Like her, I find people can be overwhelming, and the reasons are similar – non-vocal communications.

While humans may be the only species to have developed a language, all vertebrates and many invertebrates communicate in various ways with their own species, and to a lesser extent other species. And while non-vocal communication may take second place to spoken (or written) communication in humans, it remains an important factor in our everyday communications.

For the first 60 years of my life, I was totally unaware that language (spoken or written) was complemented by other forms of communication, namely body language and facial expressions. I’m not alone. Many people don’t realise that body language exists, but nevertheless, they use it and read it every day. It’s instinctive to them. For many autistics, including myself, its not. Hence the title of this article.

During those first 60 years, I was able to read body language in domestic pets – better than most people in fact – in babies and to a lesser extent, toddlers. But apart from the way lips form with a smile or laughter I was unaware that the face, especially the eyes, can convey a whole raft of emotions and ideas. Even so, I was unable to distinguish between a grin and a grimace. I was completely unaware that humans also used posture, movement of body and hands, even vocal pitch and volume to supplement the words they use.

Now that I do know that a significant part of human communication is non-vocal, I’m able to look for it, and that in itself can be overwhelming. In the first place, making a conscious effort to look for non-vocal communication requires effort, so much so, that sometimes I forget to listen to the actual words being spoken. And then I’m always asking myself whether or not a particular facial or body movement is indeed intended (intentionally or not) to communicate something. And if it is intended to communicate something, what exactly?

I managed to survive the first sixty years of my life, more or less intact, not knowing that body language and facial expressions play a vital role in interpersonal communications. I’m yet to be persuaded that knowing it exits at all, let alone its importance, makes my communication with others, as individuals or groups, any less overwhelming. In my case it might actually make it more so. Group dynamics is another mystery to me (Lyric touches on it in the post linked to above), but that’s a topic for another day.

The case for autistic pride — Yenn Purkis Autism Page

For a great many of us on the spectrum, Autism Awareness day/month in April is less than helpful especially in the form promoted by Autism Speaks – a “support” organisation that definitely does not speak for Autistic people. Instead, Autistic Pride Day (June 18) is the day to show the world we are not inferior but just equal and different. I might have something more to say on the day that is more relevant to my personal experience, but here is a post by Yenn Purkis that I believe most neurodivergent people (not just autistics) can relate to.

Friday June 18 is Autistic Pride Day so I thought I would write a blog post all about autistic pride. Sometimes people say ‘why would you be proud? You can’t help being autistic. It just is.’ I think for members of marginalised groups, like Autistics, pride is a political act and a way of asserting […]

The case for autistic pride — Yenn Purkis Autism Page

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.