The video says it all. There’s nothing more I need say. (Turn on closed captions if you have a hearing disability)
One thing I do notice when with Quakers, is how much my comfort level varies depending on the occasion. In other groups and settings, even on occasions the family, I always feel like a fish out of water, and I feel much the same with Quakers in “unstructured” situations, for example chatting during refreshments after worship. But in more structured situations such as meeting for worship itself, “Afterwords” (a time for reflexions or thoughts that arose during, or outside of, meeting but one felt wasn’t suitable for ministry) or business meetings or discussion groups, I feel “at home”.
What sets “structured” conversation apart is the mode of communication that follows implicit but undefined guidelines. These include moments of silence between each speaker, and one doesn’t respond directly to another speaker but simply speaks their own mind or thoughts. “Let your truth speak” (an old Quaker saying). The idea here is that one should speak to their own truths, not oppose or argue against those of another person or group. It allows individual Quakers to hold a wide variety of perspectives, without being judged right or wrong, and perhaps more importantly, encourages one not to pass judgements on others based on one’s own biases and prejudices. We all have them.
For me this mode of conversation provides me the opportunity to truly communicate. It allows me the time to digest what has been spoken and time for me to convert my own thoughts into reasonably structured sentences. I really struggle forming sentences “on the fly”. Not only do I have to find the right words and put them in the correct order, I then have to manipulate the jaw, lips and tongue “in real time” to convert those words into sounds that will be intelligible to the listener.
This is a tall order for me, even in company that I’m comfortable and familiar with, but in other situations the fear of misunderstanding, or worse, being misunderstood generates stress that has a negative impact on how I perform. Perhaps I’ve mastered the art of conversation to a limited degree, but in my youth I was extremely clumsy. Let me assure you that fear caused through being subjected to violence, both verbal and physical due to communication failures has left an indelible mark on my confidence in social situations.
Simply knowing I don’t need to respond directly to anything anyone else has said is comforting and allows me to feel an equal among equals. Simply knowing I’m not going to be judged by what I might say alleviates that subconscious fear of violence that always lurks when when in company of others. Simply knowing I will be given the space to allow my thoughts to grow into words that can be shared gives me a freedom of expression I seldom experience elsewhere. I feel valued.
Over the years, a number of atheist fellow bloggers have recommended I would be better off joining a sports club than “wasting my time with religion”, but I beg to differ. At least their suggestions have been with the best of intentions, which is more than I can say of some other sections of society. For me religion isn’t about theories, theology, dogma or creeds (absent within quakerism) nor about deities or about believing what others claim is The Truth. For me religion is experiential and how one responds to that experience.
I don’t believe in the supernatural, but often my response to the good within humanity, the beauty found in nature, the awesomeness of the universe, and even simply knowing I’m uniquely me, is so intense that it feels like there is “something” that others might explain as being supernatural or divine. Please note the emphasis on how the experience feels, not that there actually is a supernatural dimension. This is most fully experienced in the company of others with a similar perspective. For me that’s among Quakers.
What gave rise to this post was that I was strongly reminded of how awkward, uncomfortable, and dare I say fearful I feel in unfamiliar situations. In the early hours of yesterday morning (about 12:20 am from recollection) I Zoomed into an online Quaker meeting for worship at Woodbrooke in the UK. As always with silent worship, I felt right at home, and I remained that way until the end of the meeting. Then as conversation started, I felt the panic set in.
There was only one person at the meeting that I knew. I have known her through the medium of blogging for seven or so years, and while I am very comfortable about sharing my thoughts with her through the medium of WordPress, in the “real time” environment of Zoom, I struggled to make any form of “normal” conversation, what is often referred to a “small talk”. I should have reminded myself that she too is a Quaker and that we both could have slipped into the Quakerly “structured” mode where moments of silence aren’t considered awkward and where conversation doesn’t need to imitate small talk. I’ll try to remind myself of that next time.
One final observation. It occurs to me how much the Quakerly form of communication suits the autistic experience. Generally Autistics are not interested in games of one upmanship, debating or winning arguments. In spite of our social awkwardness, we’re more amenable to sharing and cooperation, and due to our minority status in a neuro-normative world, are more appreciative of differences being … well, just different. It’s not a case of being better or worse, right or wrong. When austics get together their form of communication is often along the lines I’ve described here, with perhaps shorter silent periods between speakers. Our normal mode of conversation parallels the Quakerly “structured” mode to a remarkable degree.
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”.
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).
I had one of those pesky con artists, this time claiming to be from the Spark Security office (Spark is NZ’s largest ISP) informing me that there was a problem with my internet connection and it would need to be shut down, however if I cooperated the issue could be fixed on the spot. As usual, I let the caller lead me through the various steps of trying to gain control of my computer. As typically happens, she incorrectly assumed I was using Windows (I was asked to describe the key to the right of the left Ctrl key) and we spent a fruitless half hour trying to bring up the Run command box. However as I run a variant of Linux, that’s not an option.
Finally she attempted to get me to download and install a remote desktop application, on this occasion AnyDesk, usually it’s TeamViewer. It was at this point that let her know I wasn’t entirely stupid and needed verification that she was indeed who she said she was. We then spent another twenty-five minutes discussing or perhaps arguing about her credential. Strangely, when I told her that so far this year I’d had at least ten hoax internet related calls she tried the “not everyone is evil, so you should be more trusting”. Yeah right.
We spent another twenty or so minutes while she tried to persuade me that all I needed to do was trust her, and I insisted I wasn’t able to do that. She finally gave up after (for her) a frustrating fifty-four minutes. I despise the actions of such individuals. I’m not going to judge the person as harshly as I don’t know their circumstances, but attempting to fleece someone simply because one can is surely a marker of one’s contempt for others.
The Wife and I went to our usual barber/hair stylist for haircuts plus a beard trim for me. He’s a very sociable guy who seems to be able to encourage his clients to chat about all and nothing. The Wife had her hair done first and the room filled with loud and very public conversation between her and Ihaia (the barber) including politics (NZ and the US), families (his and ours), the weather (it’s been atrocious today), and of course Covid (especially the regarding deniers and anti-vaxers). Even I am able to participate although perhaps less fluidly than other customers, and always privately. During my time in the chair, I happened to mention that yesterday was our fiftieth wedding anniversary.
Afterwards, as the Wife was about to take out her EFTPOS card Ihaia told her to put it away as the haircuts were on him. When the Wife asked why, he said it was a fiftieth anniversary gift. Obviously, she hadn’t heard my conversation with him. While the Wife almost broke his neck in a heartfelt hug, the other customer clapped and cheered. Now that’s a good feeling.
While I’ve been at the receiving end of abuse for much of my life, I understand why. Most people are able to empathise only with what is familiar to them. They have no way of understanding what an autistic person experiences – hell, even many so called autism experts have no clue – so they judge my behaviour in neurotypical terms. Making allowances for that, I find most (but not all) are kind and generous.
Then there are the few who have little or no interest in the well being of others, and seem to have utter contempt for them. One being the former POTUS and another being yesterday’s “Spark security officer”. Fortunately I’ve never met one in person. They either arrive in news items, by email or telephone, always from a location outside of Aotearoa. It’s only since the internet has become ubiquitous that I have had personally experienced scam attempts. I wonder if this says something about the internet, or modern society, or is it simply a reflection of the fact that I’m fortunate to have been born in the least corrupt nation on earth?
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.
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
While most of my readers have been living under various forms of covid-19 restrictions for upwards of eighteen months, for us Kiwis in Aotearoa New Zealand, and especially outside of Auckland it is a novel experience. Social distancing and masks have not been everyday parts of our lives until around 2 months ago when the delta variant finally succeeded in breaching our border security measures and is proving impossible to eradicate, unlike previous variants.
Mask wearing is now mandatory for people aged 12 and over when taking public transport or visiting businesses, and recommended when away from one’s home or “social bubble”. Personally, apart from yet being unable to find a means to avoid the fogging of my glasses, I find my stress level definitely rises to the point where it can’t be ignored after about 30 minutes of continuous mask wearing, and I need to remove it, even if only for a minute, to restore myself to something resembling normalcy. I can usually achieve that by retiring to the car or finding an out of the way park seat or equivalent where the mask can be briefly removed in safety.
However, that’s not the most serious downside to mask wearing. I have always had impaired hearing. I was diagnosed as having 70%-90% hearing loss when I was around 7 or 8. Normally I can get by reasonably well, and when a word or two can’t be clearly recognised, I can usually deduce it by context. It’s only just in the past week that it has really dawned on me how reliant I am on lip reading as an essential component of my ability to understand the spoken word.
I’ve recently had several occasions where it has been necessary to converse with a shop assistant while making a purchase. In one case it was a quiet environment but I was unable to recognise even half the words spoken by the assistant. Often I was unable to understand even the gist of what he said. By the end of the transaction I suspect he was just as frustrated as I was about the slow progress of our conversation. I found the entire process embarrassing and somewhat humiliating.
Later in the week, I visited a somewhat noiser shop where I had gone to pick up some items I had bought and paid for online. Sure I could have had them delivered, but the delivery would have cost more than the products. I’m not a penny pincher, but we do have a fixed and somewhat limited budget to live on. In theory I should have been in and out of the shop inside of a minute, but it was not to be. It didn’t help that the online instructions for collecting online purchases were incorrect for the local branch. In fact it may have been less confusing if there had been no instructions at all.
After waiting at the counter under a sign reading “Collect online purchases here” and seemingly being ignored, I sought out a shop assistant and explained why I was there. To cut a long story short, it took over half an hour to collect my purchase and only then because I finally resorted to seeking yes or no replies or asking them to point or make a specific gesture order for them to communicate with me. At no time did it occur to them to initiate non-spoken communication. I found I had to give specific instructions. Even when I discovered that where I was waiting for my pickup is no longer applicable, and then asking where I should go, no one thought to point in the appropriate direction until I specifically asked them to point with their arm/hand/finger in which direction I should go.
I’m not sure what sort of privileged lives the young people working in that shop have “endured”, but it was apparent to me that they wouldn’t understand the irony of directing a wheelchair bound person to take the stairs to a different floor or instructing a blind person to read a sign painted on the wall. I would have thought that people with disabilities are encountered often enough that most non-disabled folk would have some level of understanding or empathy. Apparently not.
Come to think of it, while I don’t consider being autistic as being disabled, some of the hyposensitivities and hypersensitivities that result from being autistic can be made disabling by a lack of empathy, and sometimes by antagonism in the 99% of the population who are neurotypical. So in hindsight I really shouldn’t be surprised by the lack of understanding or empathy I have received over the past week or so due to no longer being able to augment spoken conversation by lip reading.
Perhaps I am on more common ground with neurotypicals when it come to reading facial expressions of those who are masked. I’ve heard and read many complaints about how much more likely it is to misunderstand someone or be misunderstood when masks cover so much of the face. I’ve queried a few acquaintances about this, and they tell me that it does reduce the amount of non-verbal communication they receive. The amount of perceived loss seems to vary considerably. When pressed, it’s varied from “some” to “heaps” (a lot).
Most people don’t think about how much body language and facial expressions contribute to spoken communication until it’s brought to their attention or they find it missing from others or they realise their own intentions are not always fully understood. The necessity to wear masks is bringing the significance of non-verbal forms of communication to the attention of some of the more socially aware folk.
My own (admittedly very anecdotal) investigation suggests that people rely on the eyes as much, if not more, than other facial expressions. So while a mask can reduce the amount of non-verbal information received, it doesn’t eliminate it. If anyone has tried the Mind in the eye test, they will realise how much most people can read from looking at the eyes alone. So spare a moment to consider the situation I now find myself in.
I do very poorly when reading facial expressions. I can recognise a few basic facial expressions, but if I rely solely on the eyes I’m lost. The average for adults taking the Mind in the eye test is 26 out of a possible score of 36, but varies from 17 to 35. Women average slightly higher than men. For autistics, the average is 22. I’ve tried the test many times, and the best I have ever done is 17 out of the possible score of 36. Typically I hover around the score that might result from random selection – a one in four chance of getting the correct answer for any given question – 9 out of 36. In other words, I haven’t a clue how to read eyes.
It is becoming clear to me that what emotions I can read from the face depend almost entirely on the mouth and now that they are effectively hidden behind masks, I am blind to emotions being expressed unless someone describes their emotion(s) in words. I’m really not sure how I can effectively remedy the the losses I now realise I am faced with, as I don’t see the likelihood of masks being done away with for some considerable time, if at all.
I’ve spent seventy years learning how to limit social faux pas, and more importantly, how to recognise them when they occur so that I can take remedial action. I can foresee that mask wearing will set me back decades. Perhaps it’s time I seriously thought about becoming a hermit as a full time occupation.
I, and I suspect many others on the autism spectrum, have found alternative forms of communications forced on society by the current pandemic less threatening, more comfortable and less open to miscommunication (from my perspective) than the usual face-to-face forms of communication that most neurotypical people engage in. As the post I’ve linked to below discusses, the way autistic people typically communicate can be advantageous even to those not on the spectrum, especially in the “new normal” that’s likely to be around for some considerable time.
The other day I was at work and was hit by a revelation. It had been nagging at me for a while – I could feel that something had shifted. But I never would have predicted that I would be facing the world of work with a social advantage due to my autism. I’ve had […]We All Need to Work More Autistically — Autism and Expectations
ABA is perhaps the best known “therapy” for autistic people – especially autistic children, but it’s still conversion therapy, and is just as harmful in the view of many autistic adults. What is less well known is that this form of “treatment” for autistics is the basis of all forms of conversion therapy, and now widely condemned in other fields. Unfortunately people who are autistic can still be subjected to electric shock “therapy” in order to make them appear less autistic (a recent SCOTUS decision means it still continues in America). All conversion therapy is cruel and inhumane, and I don’t care whether it’s in the “treatment” of those in the LGBTQI+ community or the neurodivergent community. It must stop!
Today we have presented our submission to the government’s Conversion Practices Prohibition Legislation Bill. From today we will will start counting the days until all forms of conversion therapies are banned in Aotearoa New Zealand. Our hope is that this page will only need to be appended a few times with further activities to remind…Countdown towards a ban of all forms of conversion therapy — Autistic Collaboration
I believe all forms of conversion therapy are wrong – evil might be a better word – including ABA “therapy” for autistic kids. The evidence (if one cares to look) is self evident. This post from Autistic Collaboration discusses changes that should be made to the bill currently passing through the Aotearoa New Zealand Parliament banning the use of conversion therapy. As it stands, the bill bans its use for sexual orientation, gender identity and gender expression but offers not protection to autistic kids or adults.
Media release: 7 September 2021 Include all conversion therapies in legislative ban, says autistic community Although the government’s Conversion Practices Prohibition Legislation Bill is welcome progress, it should be extended to ban all conversion therapy in Aotearoa New Zealand, say members of the autistic community. In a submission to the Justice Select Committee, members from…Include all Conversion Therapies in Legislative Ban — Autistic Collaboration
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.