Thoughts on autism, religion, culture and language and their intersections: Introduction

I was originally going to title this topic something along the lines of “My experiences of the intersection of being autistic (undiagnosed for 60 years), being religious, being in a mixed marriage (by the way of ethnicity, language and religion), living in a liberal, secular, bicultural, multi ethnic society, and how language and social expectations affect communication across these intersections“. A little bit long and yet still not quite defining what I wish to say over a series of posts starting with this introduction.

Being autistic in a neurotypical world is fraught with difficulties, not least of which is communication. Because of how I communicate I have been described as deceitful, dishonest, devious, disingenuous, confused, incoherent and a liar, amongst many other derogatory terms. Perhaps from a non-autistic perspective it may seem so, but it most certainly not my intent. I earnestly try to be unambiguous, accurate and truthful at all times. I abandoned trying to be succinct a long time ago as doing so guarantees a misunderstanding of what I am trying to communicate, so I tend to be somewhat wordy as I throw in analogies and examples to hopefully illustrate what I mean.

Autism is usually defined in terms of deficits – for example: “Deficits in social communication and interaction”; “Lack of facial expression”; “Lack of eye contact”; “Not engaging in imaginative play”. This is how the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, version 5) defines autism and is the “Bible” used by the American medical profession to diagnose and treat mental disorders. For this post I will briefly touch on Deficits in social communication and interaction. At best, that description is deceptive, at worst, it is patently false.

Until the internet became ubiquitous, autistic folk had little to no opportunity to meet and share experiences with other autistics. Before the internet I had never met another autistic person, and although I might have met as many as a handful “in the flesh” in the past 20 years, I communicate with fellow autistics every day online. We were lead to believe that we were little more than a list of deficits. We do indeed struggle when communicating with neurotypical people. But now we can meet in the tens or even the hundreds, and on such occasions it is the neurotypical minority of those who have joined us who display the very same deficits usually attributed to autistics. It has become evident that autistics can communicate just as effectively as neurotypicals when that communication is with others of the same neurology. The problem arises when people of different neurologies communicate. As neurotypical folk outnumber autistic folk by about sixty to one, usually the blame is placed entirely at the feet of autistics.

What I am describing here is the double empathy problem. It’s a theory put forward by Dr Damian Milton around 2010 and has been slowly gaining traction ever since. The theory does fit the experience of autistics and most of us believe the available evidence supports it, but the non-autistic community seems to be less willing to even contemplate the concept let alone investigate it. Here follows a very brief summary of the double empathy theory:

Simply put, the theory of the double empathy problem suggests that when people with very different experiences of the world interact with one another, they will struggle to empathise with each other. This is likely to be exacerbated through differences in language use and comprehension.

Dr D Milton, 02 March 2018

Perhaps I could have titled this series “The double Empathy Problem”, as it seems apparent to me that the theory fits not only the issue of mutual understanding between autistics and non-autistics, but also mutual understanding between those of different religious persuasions, and those with different ethic, cultural and language experiences. However, I don’t intend this series to be theoretical or based on anything other than my own personal experiences and how those experiences have coloured the way I perceive and respond to the world in which I live. So for the meantime, the current title will remain.

I wish this series to be an exploration with no destination in mind. I am 73 years of age and autistic, although I and everyone else was unaware of that fact for 60 years. I have suffered from migraines for a little over 60 years, and of that I have been painfully aware (pun intended). More recently I have discovered I have aphantasia (an inability to form mental images), alexithymia (emotional blindness) and prosopagnosia (face blindness), and although I have probably had these from the day I was born I was not aware that how I experienced the world was any different from that of my peers.

I have no idea where this series may lead nor if it will go far. It’s been an on and off affair for some time in the wordlessness of my mind. Yes, that’s another unusual characteristic I possess. I don’t, can’t think in words, again something I didn’t realise others could do until perhaps a year or two ago. There’s probably a scientific name for this condition but I have not seen any reference to the condition let alone a name for it. Converting thoughts into words is a laborious procedure if I can’t draw on my stored source of preconstructed or memorised word sequences, so it’s unlikely that future posts in this series will occur at frequent intervals. For example I started this post at 8 this morning and apart from an hour while attending a Zoom meeting, and breaks for refreshments and calls of nature, I have been working solidly on it all day. It’s now 11pm. That works out at less than 100 words per hour!

If you wish to join me on this journey, you’re more than welcome. If you wish to contribute a comment or question my interpretation of my experiences, please feel free to do so. What I will not tolerate is any attempt at gaslighting. If you don’t know what that is, Google it, or wait until I cover the topic in a future post in this series. I have been subjected to gaslighting, both intentional and unintentional for much of my life as no one, including myself, realised my experiences were any different from those of my peers. I now know differently, so please don’t try.

And on that note, I will pause for now.

Counting sheep

Falling asleep is a process I’ve found difficult for as long as I can remember. Until quite recently I thought counting sheep was an irrational metaphor used to describe an aid in getting to sleep. As a child I was often advised to count sheep in such situations, and in more recent times during a stay in hospital, I was also given the same advice. My response has always been “How?” No one has ever provided me with even just one sheep to count.

Whenever I asked “How?” people tend to be taken aback, and then in a manner that assumes I’m an idiot, carefully and with deliberate slowness, usually say something like
“Imagine a fence with a gate. Now imagine sheep jumping over the gate. Just count each sheep as it jumps over.”
or
“Imagine a flock of sheep in a hillside. Simply count the sheep starting from the nearest. If you run out of sheep, Imagine a different hillside and continue counting.”

Such explanations were of no help at all, and as I child, any further attempts on my part to gain a better understanding of how to imagine such situations usually resulted in anger or frustration on the part of the advisor. As I got older I learnt there is a limit on how far I should seek clarification, and it was often safer to pretend to understand the advice given, even when I didn’t.

It wasn’t until quite recently that I discovered why this process of imagining was such a mystery to me. I can’t. Well to be more accurate, I can’t imagine anything visually. I cannot conjure up a mental image in my mind. Until I discovered I have aphantasia, I never realised that most people can, to some extent, use their “mind’s eye” to visualise what they are thinking about.

When most people think of a loved one, or a sheep, they are able to to form a mental picture, sometimes quite detailed, of the person or object in mind. When I think of the wife, a family member or a sheep, all I can tell you is that I know I’m thinking of the person or thing, but that is as far as it goes.

Apparently, aphantasia, like prosopagnosia (face blindness) is more common in autistics than in the general population, but the two conditions don’t seem to be directly related. Most folk who have aphantasia have no problem recognising faces, and most folk with prosopagnosia are capable of forming mental images. I have both conditions. Are you able to create mental images, and if so, in how much detail?

Musical Monday (2022/11/14) – Bliss

Being autistic, I’m unlikely to venture into places where this song usually heard. Pubs and loud people are a form of torture for me. Bliss has become something of an iconic cult song in Aotearoa – our unofficial national drinking song. Performed by the Kiwi band Th’ Dudes, it’s kind of ironic as it was written as a satirical comment about the many drunken audiences they played to while performing on the Sydney pub circuit in Australia. Any evening when large quantities of alcohol is consumed in this nation, you can guarantee the song will the night’s anthem.

Originally this song originally referred to piss, which is slang for alcohol, especially beer, but their recording company balked at its use, hence the word piss being replaced by bliss, including as the title. The music video was recorded in a well known Wellington watering hole – The Cricketer’s Arms. The song was released in May 1980 and climbed to a ranking of 25 on the New Zealand Music Charts. It has since been voted 50th best New Zealand song of the 20th century.

While I’ll never be able to participate in rendering this song in alcohol induced revelry, I find it somewhat liberating when I hear it played at a moderate volume level. Enjoy.

Bliss – Th’ Dudes (1980)

Bliss

Yah ya ya ya ya
Ya ya ya ya
Yah ya ya ya ya
Ya ya ya ya

Drink yourself more bliss
Forget about the last one
Get yourself another
Drink yourself more bliss
Forget about the last one
Get yourself another

Drink yourself more bliss
Have a stiff one all night
Everything is alright
Try and reach the bar
Coppers took the car
Offers from the sidewalk

Drink yourself more bliss
Forget about the last one
Get yourself another
Drink yourself more bliss
Forget about the last one
Get yourself another

Yah ya ya ya ya
Ya ya ya ya
Yah ya ya ya ya
Ya ya ya ya

Think I'm at full speed
Get it up the Coogee
Hello Sailor cruising
Buy some Spanish shoes
Think I need a refill
Get it at the Cross

Drink yourself more bliss
Forget about the last one
Get yourself another
Drink yourself more bliss
Forget about the last one
Get yourself another

Drink yourself more bliss
Forget about the last one
Get yourself another
Drink yourself more bliss
Forget about the last one
Get yourself another

Drink yourself more bliss
Forget about the last one
Get yourself another

Scary stories

Halloween was a few days ago. It’s an event I ignore. It didn’t exist in Aotearoa when I was growing up and personally I’d be happy if it remained so today. Thankfully, our current home has not been visited for Trick or Treating since we moved here 16 years ago. Perhaps it’s the unlit, tree lined zig-zag path that leads to the front door that puts kids off. Whatever the reason, it means I don’t have to pretend that Halloween is fun.

Halloween has brought up the topic of how folk with aphantasia (the inability to visualise mental images), such as myself, react to scary stories. Apparently we don’t. It might explain why I had no interest in sharing scary stories as a child. According to a Royal Society Publishing article the fear induced while reading or hearing a scary story relies on being able to create a mental image of the situation/event being described. No image, no fear.

The study measured skin conductivity of subjects while being presented with a scary or frightening story such as being in an aircraft as it crashed, or being trapped in a room full of spiders that then begin crawling over you. It’s well established that strong emotions are linked to skin moisture – the stronger the emotion, the wetter the skin becomes, lowering its electrical resistance. The control group showed significant increases in skin conductivity during the presentation of the scary stories but the aphantasiacs “flatlined” showing no change in emotions.

To check whether aphantasiacs lacked emotional responses, subjects were also presented with scary images. Both the control group and those with aphantasia showed identical responses. The study indicates the there is a close relationship between visual imagery and emotions. Both the control group and aphantasiacs presented the same emotional reactions when presented with real images, but only the control group did so when no images were presented as they were able to create the mental image of the story whereas those with aphantasia could not.

Around 2% – 5% of the general population have aphantasia, while it’s estimated that 20% – 30% of autistics are also aphantasiacs. Most people with Aphantasia don’t realise that they have it unless they are tested specifically for it. I only discovered I have aphantasia in my mid 60s – around six or seven years ago. It might go someway to explain why I have difficulty identifying faces –even of those nearest and dearest to me. Perhaps it might also explain why I find little to no attachment to fictional situations, but slightly more so when I see it on a TV or movie screen.

Aphantasia is another one of those neurological differences where those with the condition are frequently described as suffering with/from the condition, in much the way autistics are often described as suffering from autism. If you are guilty of this, just stop it! Neither autism nor aphantasia cause suffering in and of themselves. Any suffering comes from how others disbelieve, devalue, ignore and gaslight the experiences of those with these conditions, and worse when we are punished because others perceive our responses to our experiences as being wrong.

Spirituality, is it “woo”

Over on Nan’s Notebook, Ark wrote in a comment “[T]hey love to include bullshit terms such as spirituality and other ‘Woo’ words“. To Ark there’s no doubt that it’s woo. I’m not persuaded that spirituality is “woo”.

Twelve days ago I attended a pōwhiri at a marae about an hour’s drive from home. The experience, as has every other pōwhiri I have been part of, is indeed intensely spiritual. Before I continue, here’s a brief description of a pōwhiri:

A pōwhiri usually begins with manuhiri (guests) gathering outside the meeting grounds. An older woman from the host side performs a karanga (call) to the manuhiri. This is when the visitors start moving on to the marae. A woman from among the visitors will send a call of response and acknowledgement. The visitors walk onto the marae as a group, slowly and silently with the women in front of the men. They pause along the way to remember their ancestors who have passed on.

Once on the marae grounds, the guests and hosts sit down facing each other. When they are all seated, speeches are made and a song is sung following each speaker to support their address. Customarily, the final speaker for the visitors will present a koha (gift) to their hosts.

To finish the ceremony, visitors and hosts greet each other with a hongi (the ceremonial touching of noses). After the pōwhiri, kai (food) is shared, in keeping with the Māori tradition of manaakitanga (hospitality).

What is a pōwhiri? Understanding the traditional Māori welcome

In total there may have been fifty guests and hosts, perhaps a few less. All the speeches during the pōwhiri were in Te Reo Māori, as were many of the speeches during the sharing of kai. I struggle in crowds. I find them overwhelming and I mean in a negative way, even in large family gatherings. Yet when I move onto a marae I feel “at home”, in much the same manner as I feel when attending a Quaker Meeting. I feel embraced, becoming one with those present. It seldom happens elsewhere.

I cannot speak Te Reo, and the few words of Māori I do know did little to help me understand the speeches, but even so I could detect the speakers’ connectedness through their pepeha. More importantly I felt the connection. It’s the being connected, being one with something beyond self that makes one’s experience spiritual. That connection enabled me to stand and speak, and for the first time in a long while I didn’t need to rehearse what I wanted to say.

Morning rain

I felt the same type of connection this morning, not with people or a community, but with nature. I stood on our balcony while steady rain fell, hiding the Ruahine and Tararua ranges and the Manawatu Gorge that separates them. The rain muffled the sounds of Feilding traffic below As I stood I felt I became one with the environment. I noticed a slowing of my breathing and of my pulse. There was a sense of belonging, a calmness that I don’t usually experience.

I noticed too that I stopped scripting. For those who don’t know what scripting is, it’s a bit like learning lines of a script for a play. I’m not really able to create sentences on the fly so my head is always shuffling words around to make intelligible sentences, memorising them and then storing them away for moment when it might be useful to pull it out and recite. It’s a process that seldom stops while I’m awake, and at times it becomes so distracting that I lose concentration on whatever task I’m undertaking at that moment. But this morning it wasn’t there – silence, serenity, being one with nature, or perhaps the universe? It then hit me that in the ceremony of the pōwhiri I wasn’t scripting either.

If I had been living several centuries ago, I might have attributed the “being one” with some type of agency – a spirit or mystical force or energy, as that is certain how the experience feels. At a time when the existence of such agencies were taken for granted, I would have had no reason to suppose it was anything else. But I live in a “rational” secular world with a better understanding of how the mind functions, so I can attribute the experience of “oneness” to the marvel that our brain is. Knowing it’s caused by chemical and electrical circuitry in the brain doesn’t make it any less an awe inspiring experience.

Dismissing such experiences as “woo” diminishes what it is to be human. I don’t know if Ark has ever fallen in love, experienced the euphoria of a crowd of spectators when their team wins a sports event or the satisfaction that comes when a difficult task has been completed. I haven’t. I can’t even imagine what those experiences feel like. But I’m certainly not going to call them “woo” simply because I don’t understand or experience them. I’m not usually aware of emotions, mine or anyone else’s. I’m not able to predict what people might do in a second’s time let alone in a minute or an hour, so I’m always of an uncertainty when around people. But in the environment of a pōwhiri or a Quaker meeting everyone becomes part of a whole which is predictable. There’s a routine created by custom fashioned over centuries.

A similar predictability applies to nature. Seasons come and go regularly as does day and night. Clouds tell me when rain is likely and how much will fall. Wind changes direction over hours as does its intensity. In one sense nature and ritualised social occasions talk to me, informing me what will happen next. There is no need to rehearse what I might need to say in the next moment, minute, hour, nor predict what might happen.

Being autistic is a little like taking part in a play where you have been given the script to Sound of music (even though I can’t hold a single note in tune) while everyone else is working to the script of Hamlet. It’s disorientating, confusing and stressful. So spiritual experiences take on even more significance whenever they do occur. It’s a sense of calm, peace and euphoria all at once, and unless you’ve experienced it, you have no idea what it is like. It is, literally, indescribable.

Woo? I think not.

Autism quote

Never a more true sentence has been written!

Autism is a disability but only because we are trying to function in a world that is not built for us and refuses to accommodate our different needs.

Autism – Given up but I’m trying – 2022/08/24

Things ableists say — Yenn Purkis Autism Page

Yenn has some very good points about how ableists treat people with disabilities – often in ways that are infantilising insulting or demeaning. I don’t view myself as disabled, but there are certainly times when society effectively disables me. Unfortunately many fully-abled people don’t realise how ableist their words and actions can be…

I recently had an unpleasant experience where a person gave me a hard time for using the accessible seat on the bus. I need to have two seats to myself due to sensory and proximity issues related to my autism. Apparently – according to this person – I didn’t ‘look disabled enough’ to use this […]

Things ableists say — Yenn Purkis Autism Page

Press Release: Judge Rotenberg Center Threatens NeuroClastic with Defamation Suit — NeuroClastic

I am autistic, and over the 12 or so years since I discovered the truth about myself, I have come to the position where I can state that not only I am autistic but that I am proudly autistic – I am an Autist. After first coming to terms with my neurology, I have gradually become more and more aware of how autistic people are treated worldwide – Abysmally, and often horrifyingly. Treatment such as the administration of powerful electric shocks that are deemed inhumane when applied to animals, terrorists or criminals is, apparently okay when applied to autistic people, and in some places permitted by law! This includes the state of Massachusetts in the USA, where the Judge Rotenberg Center (JRC) subjects disabled and/or autistic children and adults to GED electric shock “treatment”.

Trigger Warning: description of abuse and torture. Read the terrifying experience of one JRC survivor on Aspiesforfreedom’s Blog

The Judge Rotenberg Center (JRC, founded in 1971 as the Behavior Research Institute) is an institution in Canton, Massachusetts, United States, housing people with developmental disabilities, emotional disorders, and autistic-like behaviors. The center has been condemned for torture by the United Nations Special Rapporteur on Torture. The JRC is known for its use of the graduated electronic decelerator (GED), a device that administers electric shocks to residents through a remote control. The device was designed by Matthew Israel, the institute’s founder.^[1] While the FDA issued a formal ban on the GED in 2020, the device continued to be used on some residents pending an administrative stay for the duration of the COVID-19 pandemic.^[2] In July 2021, the D.C. Circuit Court of Appeals ruled that the FDA could not issue a “partial stay” but must issue a blanket ban or no ban at all, thus allowing the JRC to continue subjecting 55 people to shock in the meantime.

Judge Rotenberg Educational Center – Wikipedia

The article linked to below deserves to be read by every human rights advocate, especially in light of the attempt to stifle the voice of criticism by the very people who are affected the most – Autistic people.

For decades, the Judge Rotenberg Center (JRC) in Canton, Massachusetts, has been using graduated electronic decelerators (GEDs) to shape the behaviors of children and adults. The GED delivers a powerful and extremely painful electroshock and is worn by students 24 hours per day, every day— even during sleep and showers. The GED looks like a…

Press Release: Judge Rotenberg Center Threatens NeuroClastic with Defamation Suit — NeuroClastic

Are you Aprilness-aware? — transponderings

It’s still (just) April in parts of the western hemisphere and I’ve only just now stumbled across this (in my opinion) well written article, so I have no hesitation in reblogging it at this point in time. Anna writes what I have felt for some time but have been unable to put my thoughts together on this matter. Thank you Anna for explaining what I feel deeply.

It is, thankfully, nearly the end of another month with Aprilness. Another Autism Awareness Month – or as the ever-so-slightly-more enlightened have started to call it, Autism Acceptance Month. These are not labels chosen by the Autistic community (and I use a capital A here intentionally). This month of awareness- or acceptance-raising isn’t something any of us asked for.

Are you Aprilness-aware? — transponderings

Autism “awareness”

Ngā kaipānui kia ora

When I tell people about Autistic Pride they say, “how can you be proud of something that you have no control over? That doesn’t make sense? How can you be proud of being Autistic?”

Lyric Holmans, Neurodivergent Rebel

April is Autism Awareness month, and today, Saturday 2^nd April is World Autism Awareness Day. It’s a time when many autistic people “go into hiding”. Why? Because autism is still portrayed as a bogeyman – something that is undesirable, that destroys families, causes misery to “sufferers”, that needs to be eliminated. No it’s not. From my perspective, autism describes a way of perceiving and experiencing the world that is different from the way the majority of the population perceives and experiences the world. It’s not so much about deficits and disabilities, it’s about an alternate way of being. The bogeyman, if there is one, is that the non-autistic world writes of the autistic world as something undesirable.

So back to the question “How can you be proud of being Autistic?” I’d answer by saying “In the same way one can be proud of being gay or black or trans or Māori or Native American or…”. It’s a way of saying “Even though society devalues me for being who I am, and puts obstacles in my path that limits my ability to develop to my potential, I deserve to be recognised as a worthy and valuable member of society, and my rights and needs are no less important than the rights and needs of anyone else”.

I object to having an Autism Awareness month for the same reason I’d object to a Gay Awareness month of a Māori Awareness month. Look at it this way: there isn’t anyone who isn’t aware of there being gay people, trans people or people of colour, but that does not prevent the likes of racists, homophobes and transphobes from spreading hate and disinformation about them. It doesn’t prevent normal, intelligent people from failing to appreciate the social barriers that are placed in the way of individuals who are members of minority groups – in other words intentional and unintentional discrimination.

Likewise, I doubt that today there is a single person who isn’t aware of autism. For goodness sake, in some quarters, there’s panic about an “autism epidemic” being accelerated by vaccines or 5G or plastics or the New World Order or GMOs or… something. In fact it’s nothing more that a growing realisation within the health sector of what autism actually is. What is sad is if they had consulted with actually autistic people instead of making lab rats of us, they would have had that “Ah ha” moment long ago.

What we need is not awareness, but acceptance at a minimum. Better yet would be valuing the alternative perspectives that autistics and other other forms of neurodiversity bring to society. Because Autistic people perceive and experience society and the world differently, we express our experiences and understandings differently. Accept that our differences are not deficits, but are a valuable and important part of the diversity that makes the human species what it is.

Embrace diversity!