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.

Migraines in spring – October 2022

Blogging has almost become a way of life. While I don’t spend all that much time creating posts of my own, I do spend considerably more time reading and commenting on other blogs. Over the past month or so I have spent much less blogging time than has become the norm. The most significant factor for this is a semi-persistent low level migraine.

But if you prefer I not go into details. stop reading any further and simply enjoy a few of the flowers on display in our front garden at the end of September and beginning of October. This year the spring equinox weather has been more varied and extreme compared to the typically variable and fickle weather and strong winds usually experienced at this time of the year, ranging from the extremes of winter to typical summer weather with the space of a few days and then back again! Our garden has suffered as a consequence, but still there is much to enjoy:

Spring flowers in our front garden

Migraines are funny things. One can look up textbook definitions of the various types of migraines, but in reality few migraineurs fit tidily into such definitions. In this regard, I’m no different. My migraines have been described at various times as migraine with aura, hemiplegic migraine, chronic migraine, acute migraine, vestibular migraine, complex migraine, migraine with brainstem aura, acephalgic migraine, and atypical migraine. But from personal perspective, it’s what I experience rather than what others observe that really matters, and in this regard, they are are all much the same, varying only in the intensity of various aspects of the disease.

The one thing I am grateful for is that as I have aged, the extremely painful throbbing headache that is often associated with migraine has become infrequent as have bouts of nausea. I appreciate that many people assume a migraine is just a painful throbbing headache with some nausea thrown in for good measure, and for some people that is what a migraine is, but for a significant minority of migraineurs these are the least significant aspects of their many symptoms. It is for me.

So what have I been experiencing over recent weeks that have kept me out of the blogosphere?

Brain fog

While not a particularly “scientific” term, brain fog does describe what I experience with most migraines. It affects cognition. It’s hard to describe precisely as it affects the very skills one needs to be able to accurately recall one’s experience. Perhaps it can be described as feeling distracted continuously, being unusually forgetful, and finding it difficult to complete even simple tasks. I may find it difficult to recall what a word means or being unable to locate the correct word to use. Sometimes I might be able to understand individual words but not be able to comprehend a sentence made up of those words, and at times I may not be able to string a sentence together that is understandable to others.

Brain fog often results in short term memory loss. I can start reading or writing a paragraph, but by the time I reach the end of it, I have forgotten how it started, and have to read it again. In a worse case scenario, I simply give up as I’m unable to get the gist of a single paragraph, let alone several in sequence.

Not being entirely in the here and now means that some tasks such as driving are particularly dangerous. Being unable to concentrate may mean I do not detect potentially dangerous circumstances until too late., and even then, may not be able to choose the most appropriate (or indeed any) action to take. At least these days I am aware that I have brain fog – something that didn’t always register only two decades ago. Mindfulness training has helped in this regard. So I do know when I shouldn’t drive, much to the Wife’s frustration as she prefers being a front seat passenger even though she can drive.

Visual disturbances

Every migraine I experience affects some aspects of my vision. One of the most frustrating aspects is the inability to see clearly. It’s rather difficult to describe, and while sometimes what I see can be blurry, as in being out of focus, sometimes it’s not a focusing issue, but the inability to process what I see. One way for you to grasp what I mean is to fix your gaze on one word in this paragraph and while doing so try to read the words above, below, to the left and right of it. Difficult, right? And words even further away get progressively more difficult to read, and outside a very small window become impossible to read even though you know they are there. Well, for me during a migraine the best I can see is that word one or two away away from the one you have fixed your gaze onto.

Other common visual disturbances I experience can be seen in this next video clip where, through a virtual reality headset, others experience realistic simulations of what a migraine with aura looks like to the sufferer:

What Does a Migraine Feel Like?

Other visual disturbances include blind spots. By this I don’t mean small areas that are blank, but a functioning area of the brain “fills in the details” for another area that isn’t functioning as it should. For example I may check the time by looking at a wall clock, but the clock appears to have vanished. All I see is the wall and there doesn’t appear to be any blanks spot at all. However if I move my eyes away from there I expect the clock to be, it suddenly appears, as if by magic. What has actually happened is that I do in fact have a temporary blind spot, but another part of the brain recognises the pattern on the wall and reconstructs it to fill in the blind spot. We all have a small blind spot where the optic nerve leaves the eye, and we all have the neurology where a part of the brain fills in the missing details by “filling in the gap”, but usually we’re unaware of it occurring at all.

Motor disturbances

These are many and varied. They go from the simple such as finding it difficult to write legibly or tie shoelaces (hence most of my shoes having velcro fasteners) through difficulty with speech and balance (giving the appearance of being drunk) to hemiplegia where the right side of my body, especially the face and arm, but to a lesser extent my leg, lose strength and fail to respond unless I make a conscious and determined mental effort to control them, and then only clumsily.

Over the past month none of the aforementioned symptoms have been at their worst. In fact each symptom has by itself has been barely noticeable to others, but when so many conspire to be present at once, even in “mild” forms, the net result is a person who is unproductive, however that term is understood, and unmotivated, and when pushed to do something, performs it badly. Such is life.

Musical Monday (2022/08/15) The Carnival Is Over

Recently two great female singers have died. Olivia Newton-John is perhaps the better know singer world wide. The name of Judith Durham less so although the name of the group she was lead singer in may be more familiar – The Seekers. For myself, I have always had a soft spot for Judith’s voice and in the 60s and 70s there was always at least one track featuring her voice on every audio cassette compilation I made. And I compiled many.

I wonder if some of my younger readers even know what an audio cassette is? Out of curiosity, does anyone still have a working cassette player? I still have one that’s usable but its mono only, so playback isn’t quite the same. I’m not looking for a replacement – I’m just curious if anyone still uses that old technology.

At one time I had several Seekers albums. If I’m being absolutely honest, I bought them solely because of Judith Durham’s voice, and before meeting my future wife, I was rather smitten by Judith’s beauty and fashion sense (hey don’t knock it – it was the 1960s and I was still a teen). During migraine attacks I found her voice soothing and uplifting at the same time. If I recall correctly, one album was on vinyl and two were on cassettes, but that was a long time ago, several house moves , one flood and one burst water pipe away. Somewhere along the line, much of my loved music has disappeared, including all The Seekers albums.

There are many tributes to Judith on social media platforms, wishing sentiments such as “rest in peace“, but I’m firmly of the belief that when a person dies, they are gone – they cannot rest whether in peace or otherwise. Their memory may linger as may any influence they may have had. In the case of Judith Durham, her memory will live on in my mind for the rest of my life, and I’m very grateful for the comfort she has given me over the years, and will no doubt continue to do so.

Breaking from my usual custom, I not including lyrics with this Musical Monday, firstly because I’m including several clips, secondly because Judith’s voice is so clear, and finally because It’s the music in its entirety and not the lyrics that I value.

Georgie Girl – The seekers

I’ll Never Find Another You – The Seekers

The Carnival Is Over – The Seekers

Someday, One Day – The seekers

And finally, for those who would like a little more, watch a 1968 TV special – The World of The Seekers. Sorry the video owner has disabled playback on other websites, so you’ll need to click the link and view it on the YouTube website: https://youtu.be/40LuQVZYepE

Adopted

But who adopted who?

Let’s step back to last winter. Often when we opened the home office curtains in the morning we’d notice a fluffy cat asleep on one of the seats on the balcony. If it heard the curtains open it would wake and run away. I began to be careful opening the curtains so as not to disturb the cat.

As the weather warmed, we’d see it more often, either in it’s favourite seat on the balcony or taking advantage of a sunny spot in our garden. At first it would keep its distance from me, but I’d gently talk to it as I went about chores outside. It’s an extremely vocal cat and would let me know it was nearby. By mid Spring she (I think it’s a she) would flop down right in front of me (even when I was walking) roll on her back and demand a tummy rub and a head scratch. How could I refuse?

At first, I assumed she was a friendly neighbourhood pet that had decided our section (property/lot) was part of her territory, but as spring turned into summer and our exterior doors were open for much of the day, the cat decided that the interior of our home belonged to her as well. I had no objection, but the Wife disagreed, and would chase the cat away whenever it approached the house. However the cat persisted.

By midsummer, the cat seemed to be spending nearly all her time near our house and irrespective of the weather and we’d often see her on one of the front balconies or in the back porch depending of the prevailing wind, and she’d often meow for up to an hour pleading to be let in. The wife still wouldn’t let the cat inside, but ceased chasing it away.

My migraines can put me into a kind of dissociative state. At such times the presence of an animal can help me keep a grip on reality. Sitting outside where I can feel a breeze can also help. When that type of migraine started, I would sit outside, and the cat would come close and knead whatever part part of my anatomy it could reach – usually an arm or a leg. No demand to be rubbed and scratched as it usually did. That was the clincher!

The Wife recognised the therapeutic effect the cat had on me and relented – so long as the cat kept out of the kitchen and the master bedroom. We’re still working on the kitchen, but the cat now knows the bedroom is a no go area. Up until this point we had not fed her, but I kept clean water available for her outside as I noticed she’d drink from any source available, even from an abandoned algae filled flower pot I discovered hidden in an overgrown corner the garden.

By early March she had taken an armchair in the lounge as her own, and as the days where a door could be left open for her became fewer, I found myself becoming her personal doorman, at her beck and call as she made her very vocal demands to be let in or out. And I mean very vocal. The solution? I installed a cat flap in the back door. It took just a few days for her to learn how to use it. Now she comes and goes as she pleases.

The cat has taken to bringing us thank you presents for making her welcome – in the form of mice. Usually one or two every day, but often more. She sits outside with her gift and meows until either I go out and praise her or until she gives up waiting and brings the mouse inside to present personally. I’ve learnt not to keep her waiting.

At least she’s not wasteful, consuming the rodent in its entirely. We haven’t had a cat for more than than 30 years, but previous cats tended to leave the tails. Not this cat.

If the cat does belong to a household in the neighbourhood, it’s not from one nearby. I suspect that if it has had an owner, they have moved and abandoned it or the cat has found its way back to familiar territory. Either way there seems to be an adoption in progress. Our next move will be to take her to the vet and find out if she’s been microchipped, vaccinated and spayed. And if she belongs to a nearby family. In the meantime, we have started feeding her. Not that she eats much. It depends on the number of mice she’s caught. On a good hunting day, she doesn’t ask for food at all.

We haven’t given her a name. She’s referred to as The Cat or Puss. That seems to be sufficient in my view and it appears she’s not bothered, but some family members are demanding she be given a “proper” name. I’ve suggested neko or ngeru (the word for cat in Japanese and Māori respectively), but for some reason neither name has met with approval.

I give you The Cat:

The newest addition to the family – The Cat

Speaking silently

Advices and queries E:4 “Obey the laws of the state, except when they conflict with your inner conviction“. My thoughts go out to those in Russia, who have chosen to protest the invasion of Ukraine, knowing the sure consequences – arrest by an authoritarian regime. Choosing to put oneself in harm’s way by the state when they could remain silent takes much courage. I can understand those who wish to defend their family and way of life, after all, they are directly affected. But to take stance on a matter of moral conviction knowing the inevitable consequences takes a special kind of courage. Let us hold them in the light as well as the people of Ukraine.

Ministry offered at Meeting for Worship 27 Feb 2022

Today I have been having one of those migraines that affect my ability to string together a spoken sentence that will be comprehensible to others. Nevertheless I can still have an urge to communicate. That happened this morning during Meeting for Worship. Usually when I have an urge to offer ministry I resist. In perhaps the last 30 years I’ve offered ministry no more than a handful of times.

My resistance is not because I feel I have nothing to offer. It’s because experience has taught me that by expressing myself I make myself vulnerable and open to misinterpretation. A fact of life that every autist is painfully well aware of, but of which the non-autistic community write off as rudeness, stupidity, or social ineptitude on our part, worthy of being written off as inconsequential or ignored at best, or worthy of ridicule and/or retaliation at worst.

Experience should have also taught me that there are exceptions to that rule – whānau and Friends (Quakers) in particular don’t jump to the conclusion that I might have some ulterior motive such as malice, ego, selfishness or an intent to offend. Whānau because they have known me all their lives, or for seventy plus years (whichever is the shorter), and Friends because they tend to be more considered in their communications – in “Quakerspeak”, seeking, and speaking to that of God in every person.

Before I continue, I’m convinced there is “that of God” (which I usually interpret as being a spark of good or a spark for good) in everyone – no exceptions – but I will admit that there are a few individuals where it seems so well hidden that I have been unable to find it.

Often when I have an urge to speak, beit during Meeting for Worship or any other time, I carefully construct the concern into a series of sentences that I feel are adequate, and then articulate those sentences silently. Unable to overcome the fear of what I want to say being devalued, but needing to speak nonetheless, I speak my words silently, with no movement of jaw, lips or tongue.

Speaking silently like this does ease the urge that has built up, but in practical terms it doesn’t do much in the way of communicating my thoughts or concerns to others. And yet so many times I when I do this at Meeting for Worship, someone will later stand and speak on the very topic I chose to be silent on. Perhaps if I believed in the existence of a divine being then I might explain it away as being the hand of God at play, but my rational self explains it away as more likely that within the community of Quakers, Friends have similar values and concerns, even if our experiences are different. Whatever is concerning me is probably concerning other Friends as well.

We’ve been fortunate on this country in that since the beginning of the pandemic there has been only six or seven weeks when covid mandates have prevented Quakers from holding Meetings at the Meeting House. During those times, Meetings were held via Zoom. That platform has since become part of the local Quaker environment, beit Meetings for Worship, Meetings for Business or discussion groups and seminars. Those who are unable to attend in person can now attend via Zoom. More often than not I’m the only person attending local Worship by that platform, but occasionally I’m joined by one or two others.

Today during Worship I had one of those urges to speak. Today I didn’t need to suppress it because the migraine prevented me from uttering much more than intermittent slurred monosyllabic words. I felt more frustrated than fearful. Then it occurred to me – Zoom has a chat facility. I could speak via the medium of typed words. So I did.

I practiced what I wanted to say, then typed those words into the chat box. Now that the migraine has somewhat abated, I can see that the spelling and grammar were atrocious, but nonetheless after Meeting Several of those attending asked if they could have permission to quote me at other events, so it seems my message spoke to some Friends today. Let’s hope they tidy it up before sharing it 🙂

From my perspective, the experience was liberating. I was able to express myself at my own pace instead of the pace that most people expect of the spoken word. In many ways today’s experience has been even more liberating than discovering the blogosphere. There, I’m more or less anonymous but communication is at a pace that suits me. Within local communities I’m not so fortunate, but at least now, within my Quaker community I have an alternative means of “speaking” when I’m motivated to say something.

The quotation at the top of this blog post is a slightly tidied up version of what I typed into the Zoom chat box this morning. I wonder if I would have the courage to make such a stand if I was a Russian resident?

Musical Monday (2022/01/03) Kōauau

Creative Commons: Kete New Plymouth

Today’s music is somewhat different in that the title of this post refers not to a song but to a musical instrument – the kōauau. This a traditional Māori instrument usually made from wood or bone and often elaborately carved. It one of many types of flute used by Māori and produces, at least to my ear, a hauntingly beautiful sound.

To western ears, traditional Māori music (as opposed to modern forms of Māori music) does not use musical scales with specifically set notes or tones, but instead uses microtones that slide, instead of stepping, from one tone to the next. To the Western ear it may sound monotonous and somewhat mournful or melancholic, but then to those who are more familiar with forms of traditional Asian music, Western music sounds similarly monotonous and dull.

I frequently suffer migraines at which times many sounds become unpleasant and painful. This often includes music especially if percussion instruments are present or where the tune generates a beat or repetitive pattern. Usually the human voice is fine, but if accompanied by piano, guitar or similarly struck or picked instruments, the result is at best unpleasant during a migraine. Interestingly, during a migraine attack, most drum sounds are unpleasant, with the exception of taiko drums, which I actually enjoy. I have no idea why that might be.

I find the microtonal sliding shifts created by the koauau and many other traditional Māori wind instruments very soothing to the soul when a migraine interferes with my ability to feel human. At such times, the haunting sounds of the koauau and similar instruments provide an anchor to reality – the knowledge that I actually exist.

Here are a few Youtube video clips that convey the sound of the koauau. The first clip includes an accompanying guitar, which can be unpleasant depending on the nature of the migraine.

Traditional kōauau sound with accompanying guitar

I find this next clip absolutely beautiful. The koauau is accompanied unobtrusively by traditional percussion instruments, and if you listen carefully, you’ll also hear the purerehua (bullroarer).

koauau accompanied by purerehua and percussion instruments.

Finally, a video clip where taonga pūoro(taonga: Treasure, pūoro: sounds/vibrations of nature), Māori musical instruments, are combined through the magic of modern technology into my ideal “migraine music”. It’s doubtful that traditional musical instruments were played together as an ensemble. It seems to have been a single instrument played alone or accompanying the human voice.

Experience Jerome’s collection of around 40 unique and rare Māori musical instruments from Nguru (Whale tooth nose flute) to Pōrutu Pounamu (Greenstone long flute), Kōauau Toroa (albatross wing bone flute) to the unique Pūtōrino (a cocoon shaped bugle flute made from the mighty totara tree)

Auras

One of the aspects of being both autistic and a migraineur, is that I am often unaware of an impending migraine until it reaches the acute phase – a throbbing headache. Before I go any further I need to point out to any reader who thinks a migraine is simply a very bad headache, it isn’t. There is a spectrum of symptoms related to migraines, and a throbbing headache, while the most common and perhaps most well known symptom, is but just one of many. Each migraineur will have a different list of symptoms that affect them, and any single migraine attack can contain any combination of those symptoms.

I’m perhaps fortunate in that most of my migraines don’t develop full blown migrainous throbbing headaches – what is known as the acute or headache phase of a migraine attack. Migraines are often described as having four phases: the prodrome which can last from several hours to several days; the aura phase, which are typically 10 – 30 minutes but can last for several hours and very rarely in some individuals for more than a day; the acute or headache phase which can last for hours and occasionally days; and finally the postdrome, which can last from hours to days.

I’ve been flipping into and out of aura phases for several days without having anything other than the occasional mild headache. I don’t think my cognition has been affected for which I’m grateful, as losing cognitive skills is perhaps the most debilitating, not to mention dangerous, aspects of migraine attacks for me.

At this moment I am most definitely in an aura phase and as far as I can tell, it’s only affecting my vision, so I thought this might be an opportunity for me to attempt to describe what I’m experiencing while I’m lucid. So let’s begin.

I’m sure most people have seen the shimmering effect of a heat haze, if not here are two examples:

However, unlike a real haze, the distortion created by my migraines is not affected by distance. Everything shimmers regardless of how near or how far away it is. Another way of describing the distortion might be looking at objects below water from above the water. As the surface ripples, the objects below seem to move or shimmer.

Another visual distortion that occurs during my migraine is double vision. Here’s a simulation:

Here’s another illusion caused by migraine. If you’ve ever driven in the rain without switching on the windscreen wipers, or if you’re out in the rain while wearing glasses you’ll experience something similar:

Currently I’m experiencing all three effects simulated above at the very same time. But wait, I’m not finished yet. There’s one illusion I haven’t sound a satisfactory simulation of. That is a type of blind spot that isn’t. Let me explain this way:

What we see is not an exact recreation of the image that arrives on the retina. That image is processed to clean up extraneous artifacts in much the same way as analogue and digital photographs can be enhanced to remove such things as a hair or dust on the lense or to remove that annoying overhead power line that is spoiling an otherwise perfect shot. The human eye has several “flaws” that affect the image we perceive – blood vessels, floaters within the eye, and a blind spot on each retina for example. We usually don’t notice these artifacts as the brain is quite capable of cleaning up the image and “filling in the blanks”, and we aren’t even aware of it happening.

I’m not a neurologist, so the following explanation is only an approximation of what I think happens but it does describe my experience. Many migraineurs experience blind spots. These aren’t spots that appear light or dark, or as a colour, but as nothingness. It’s very difficult to describe, and I suspect one needs to have experienced it to understand it. I do experience these, but sometimes my brain seems to into overdrive and attempt to fill in the missing information.

Perhaps the best example and one that occurs frequently is what I have termed the “missing clock on the wall” syndrome. This is most readily reproducible when the wall has a regular background pattern such as a wallpaper. If I attempt to look at the clock and it is obscured by a blind spot, instead of seeing nothing, I can see the wallpaper pattern as if the clock wasn’t even there. Somehow my brain has calculated what part of the wallpaper pattern is missing and recreates it.

I’ve even had the situation where the blind spot covers an area slightly smaller than the clock but as large as the clock face. This results in the clock frame being visible, but there is a hole where the the face should be and I can “see” the wallpaper behind it. It can be quite surreal.

The above are merely some of the visual auras that migraineurs experience – I also loose the ability to perceive distance, but I don’t know whether that is due to the distortions I’ve described above or whether it’s due to another part of the brain malfunctioning.

Then there are other forms of aura that are not visual that many migraineurs experience. Here’s one that isn’t a simulation:

No, Serene Branson was not having a stroke, nor had she taken any drugs. She was experiencing a migraine aura that affected her ability to form words. I’ve experienced this often, although perhaps not quite as extreme as the one that Serene experienced above. However there are times when I’m unintelligible and my enunciation drops off. I sometimes sound as though I’ve had a few too many drinks.

Then there’s occasions where motor skills are affected. Balance can become difficult, and tasks such as tying shoelaces or pouring water into a cup become extreme feats of concentration with no guarantee of success. Even doing up buttons can become nigh on impossible, and as for going to the toilet, well let’s just say standing during the performance is very unwise.

And then there’s photophobia, where bright lights, strong contrasts and rapid movement within my field of vision can be painful. Most people have experienced the feeling when a very bright light is unexpectedly shone in their eyes. Just multiply that discomfort by an order of magnitude.

Another aura I experience is phonophobia. If you’ve ever suffered from a severe hangover, you’ll know exactly how painful loud or sudden noises can be. Other auras I experience is hearing sounds that don’t exist. I often faintly hear a telephone ringing or the wife calling my name from a distance, but neither are real. And finally, well, for this post, the senses of taste and smell are affected. Not only do some smells that I usually like become disgusting – especially sweet smells, but I often think I can smell slightly overdone toast, almost, but not quite burnt. Then there’s the metallic taste that lingers in the mouth, but to be honest that’s the least my concerns as nausea and vertigo seem to quash any desire for food.

---

It’s now around eight hours since I completed the first draught of this article, and I’ve just spent some time tidying up the text, mostly adding words I thought I had included but hadn’t, and placing words into the order that most English speakers expect. If I hadn’t done that, readers would have found a few sentences that, in written form, were about as intelligible as Serene Branson’s spoken sentences in the clip above.

I’ve avoided using the term hallucination to describe some of what I experience, as these are not a product of the mind. Instead they are a product of the processing of the senses, so the term illusion would be a more appropriate fit.

Footsteps On My Mind

I’m not a person who feels down if things don’t go as intended. Melancholy is doesn’t seem to be part of my DNA. About the only time I feel “out of sorts” is during a prolonged migraine episodes when it feels like my “get up and go” has “got up and gone”.

Although I don’t consider I have reached my “twilight” years, I’m definitely in my “late afternoon” years. Despite being a chronic migraine sufferer, and living for sixty years not knowing I was autistic, but feeling like I was a square peg being forced through a round hole I view my life as being a wonderful experience. I can’t imagine an alternative life being any better.

Mostly, I recall the good things that have happened in my life, and whether or not it’s good to do so, I tend to sweep memories of negative experiences under the carpet. One reason for this state of affairs is due to having alexithymia, often referred to as “emotional blindness”. I suck at reading the emotions of others, but I’m even worse at reading my own. I know happiness and contentment are pleasurable experiences and I know deep sadness is is not. Most others I’m oblivious to, and it’s only since discovering I am autistic have I learnt to recognise some emotions by carefully thinking about the physical manifestations that frequently accompany emotions.

If it feels like my blood is about to bool it means I’m angry (or wearing to many clothes or in the early stage of another migraine). If I feel a churning motion in my stomach, it means I’m nervous (or some food has disagreed with me or Im hungry or I’m in the early stage of another migraine attack). If my face feels hot, it means I’m embarrassed (or I need to remove a layer of clothing or I’m in the early stage of another migraine attack). If I find my hands or jaw is clenched then I’m most likely very stressed out (or I could be in a state of rising anger or I’m in the early stage of another migraine attack). If people ask me to repeat something I’ve said then it might be because I feel down and am talking too quietly (or I’m in the early stage of another migraine attack and I’m slurring my speech, or we could be in a noisy environment). And so the list goes on.

Learning to recognise emotions this way is quite confusing. For example, If I feel my eyes start to water (and there’s no irritant present) does it mean I’m happy, or sad, or both or something else? If I feel a lump in my throat is this really nostalgia tinged with sadness? What else can it mean? And is it something else if I experience both the lump and the water? I really have no idea.

Over recent weeks I’ve been having moments where I recall my thoughts from my teen years many decades ago when I was beginning to understand that I was in some way different from everyone else and very different from my peers. I don’t recall having any feelings one way or the other as it dawned on me that everyone had a group of friends and I had none; that others seemed to revel in loud and noisy events where everyone talked very loudly, but I was unable to make out a single word and I’d be physically ill within five minutes of arriving; That I had no clue about the topics fellow teenagers were talking about and none of them seemed interested in why the Ab class locomotive was so ubiquitous in NZ or the nature of black holes or what technology driverless cars might employ in the future.

While I was very comfortable in my own company, I realised that having conversations with myself was not very profitable. I don’t recall feeling sad or angry or disappointed about my situation. I simply accepted that that was the way it was. But now when I look back at those moments when I began to realise that I was in some way very different from everyone else and would never fit into their world, I do feel a discomfort somewhere just below my diaphram. I’m not able to distinguish between mild indigestion and hunger, and I rarely have either sensation, but this sensation is something like that. If I’m sitting or lying I have to get up and do something, but I have no idea what or why.

I’m guessing the flashbacks and the uneasy feeling are associated but how and why? I’m confident I understand my teen self better now than I did back then. So are the sensations due to a reliving of emotions of the past that I wasn’t aware of at the time, or are they new emotions created out of hindsight and in the full knowledge of what was to come. Either way, what does this sensation represent? Regret? nostalgia? Sadness? Disappointment? Loss? Something else? I’m assuming it’s negative because it’s unpleasant.

I doubt very much that it’s happiness due to knowing how my life has turned out. For the most part I think I’ve been blessed: a best friend companion and lover for almost 50 years; two wonderful children and three amazing grandkids. What more could I desire? While there’s always a possibility that the discomfort and the flashbacks are unrelated and purely coincidental, I don’t think so. And that’s because after hearing a particular song this morning, the hunger or indigestion was much stronger and still lingers.

Popular songs have always been about the hopes and disappointments of romance, but scattered among them are a few that deal with the hopes, dreams and disappointments of every aspect of life. I find song lyrics fascinating because it is often very difficult to know what a song is really about. The song I heard this morning was one of my favourites at round the time I left school or perhaps shortly after and was about the time I realised that I was not a typical teenager by any stretch of the imagination and never would be.

As I listened to the track, I suddenly felt the discomfort rise as these words were sung:

People all around, they never seem to notice me
Maybe because my mind's behind a cloud that no-one sees the wood for trees
What's wrong with me?

Did those words speak to me then but I didn’t realise it, or are those words speaking to me now reminding me how much my life would have been different if I was not autistic? I don’t know. What I am sure of is that I’m unlikely to get a good night’s sleep thinking about it. Bugger emotions! (Is that frustration, irritation, anger, regret or something else?) They’re so confusing. It’s at moments like these that I wish I hadn’t had any mindfulness training, and I’d remain blissfully unaware of the connection between emotions and bodily sensations.

For anyone interested in hearing the source of my discomfort, here it is. I was into psychedelic music at that time which is why I might have found this piece attractive Perhaps all I’m feeling is nothing more than nostalgia for a music era that no longer exists. Oh I give up!.

Music Convention – Footsteps On My Mind

Seeing is believing

Like everyone else on this planet (perhaps with the exception of the previous POTUS) I am not perfect, nor was I born that way. Today I want to focus on some imperfections I was born with. I’m using “imperfections” here in two different ways.

• Those traits and characteristics that society deems as flaws disabilities, unacceptable or a nuisance to deal with
• Those traits and characteristics that one feels about oneself that are flaws, disabilities, unacceptable or a nuisance to deal with.

Often times, what one perceives as an imperfection may not be deemed so by society, and of course the opposite is true – what society deems as an imperfection may not be deemed so by oneself.

In my own case an obvious example is autism. Almost certainly, no one in any profession would have considered I was autistic until perhaps the 1990s and the condition became better understood. I wasn’t diagnosed as such until 2010. My family had always been very accepting of my “quirkiness”, but the rest of society wasn’t. I was cajoled, teased, bullied, reprimanded, punished and violently assaulted for being “different”.

I perceive the world differently at many levels compared to non-autistic people, and I may post more on how growing up as an undiagnosed autistic affected my life at another time, but today I want to concentrate on the imperfections of my eyesight and vision, and how those have been perceived by myself and others.

I was born with both myopia and astigmatism although neither myself, family, friends or school teachers realised it. It was finally my music teacher who realised I was unable to read music notation in advance of where I was playing that lead to my first “real” eye examination when I was 12 years old.

Sure, for the previous seven years, I had passed the usual eye test at school where one reads an eye chart at a prescribed distance.

Tests were carried out on the entire class by putting all the students in a line and then taking the student at the front of line through the test. Not being particularly assertive, I usually found myself near the back end of the line. Alternatively, we sat at out desks and were called up in alphabetical order by family name. Either way I was always in the last quartile of the class to be tested.

I don’t recall how far through the chart we were required to go, but I think it was only as far as the line for 20/20 vision. I always passed the test with flying colours. I could rattle off the letters as fast as the best of the class.

The problem was that I couldn’t read the chart apart from the very top letter, and even that was very marginal. So how could I pass every time? By the time it was my turn to read the chart, twenty or more children had already read it in my presence. First with one eye and then with the other. I had heard the chart called out 40 or more times at varying speeds. More than enough repetitions for me to have memorised it.

I don’t recall whether the memorisation was intentional or not, but I do recall that the class consensus was that “failing” wasn’t a desirable outcome, just like failing any other test wasn’t. So everyone including myself did our best to get a “good” pass. I felt good when the adult conducting the test would say something like “Very good, well done Barry”. It was praise I seldom received from anyone other than my parents.

If I had understood how bad my eyesight was, what I was missing and how corrective lenses could change my perception of the world around me, I would have had no qualms about failing the test. Such is life. It took a rather crabby and domineering music teacher to recognise my disability.

Strange as it may seem now, I had no idea that my eyesight was so poor. In fact I had the perception that it was rather good, and I wasn’t the only one. This came about because whenever we travelled along the highways I was able to recognise roadside hoardings/billboards well before either the driver or my fellow passengers. In hindsight, the explanation is simple. I had learnt to recognise all the signs not by the wording or images but by the combination and pattern of colours, which in those long forgotten days (the 1950s) tended to be consistently the same year on year.

As a humorous aside, it wasn’t until after I had my first set of glasses that I discovered that the name of one of the most ubiquitous signs at that time had been been assigned an “alternative” name by the family – an in joke I didn’t discover until I could read the wording myself: Cough Cough and Hammer was actually Gough Gough and Hamer.

I recall the sudden panic, almost terror that I experienced the first time I walked out of the optometrist’s shop wearing my new glasses. As the shop door was closing behind me and I looked ahead, I suddenly and simultaneously took a step backwards into the door and ducked. It literally felt like the world was being thrown at my face. The clarity of the detail of the shop fronts on the opposite of the road felt like they were a mere 6 inches (the NZ switch to metric measurements was still decades away) in front of my face.

It was perhaps the most disorienting experience of my life at that time. I was frozen to the spot. I don’t know how long I stood in that doorway ducking pedestrians and cars that seemed to be inches away, but were in fact yards away.

It seems rather odd now that it never occurred to me that the very obvious solution to my situation was to remove my glasses. An optometrist employee recognised my dilemma and pulled me back inside the shop and removed the glasses. After some quick instructions not to put on my glasses until I was in a small room that I was familiar with and to work up to bigger spaces from there, I was sent on my way.

As much as I wish my new glasses improved my life, they didn’t.

A characteristic of many people on the autism spectrum is the inability to subconsciously filter information arriving via the senses. For example in a crowded room where several conversations are taking place, most people are able to ignore conversations they are not participating in. Other conversations will only reach their conscious awareness when there’s a noticeable change such as in volume, pitch or body language – for example when an argument starts.

Most people have the ability to ignore conversation threads they are not participating in. I can’t. A simple analogy might be the example of being in a group conversation when all participants start addressing you all at the same time, at the same volume but all on different topics. I think the resultant confusion will cause most people to put their hands up and demand that the participants speak one at a time. That’s the situation I face all the time. ALL.THE.TIME!

It turns out that my ability to filter out visual stimuli as that same as my ability to filter out aural stimuli. I can’t. I found the bombardment of new visual information overwhelming and exhausting. Previously trees were largely blurry blobs of green. I could distinguish individual leave only at relatively close distances, so perhaps no more than a hundred or so leaves at any one time. Suddenly I was seeing thousands, hundreds of thousands, perhaps millions of leaves all at once – every one a slightly different size, shape and colour, and all moving independently in the breeze. I didn’t know how to process all this new information.

Suddenly telephone poles and power poles had distinguishable cross arms, insulators of various colours but seemingly on no particular order or pattern. I could see the wires and the patterns they wove overhead. I could actually make out birds sitting on the wires or on rooftops, and even identify the species – something I had previously only been able to do from the pages of a book.

And speaking of books, whereas previously there was only a small area around the word I was reading where the shape of individual words could be distinguished easily (I recognise words by their shape as much as I do by the letters within them), suddenly every letter on the page became individually identifiable, every one of them yelling in unison “Read me NOW!”

Wallpaper patterns now continued right around the room instead of being discernible only in near proximity. On large buildings, all the individual windows could be seen. What’s more they formed regular patterns, and any break to that pattern became a distraction I couldn’t avoid being aware of. The same with pathways. Joins formed patterns that extended into the distance and any spot where the pattern was disturbed jumped out at me. I couldn’t help but notice it.

Never before in my life had been in a situation where I could distinguish the facial features of more than five or six people at one time. Now I could see all the features of everyone in the classroom ALL AT THE SAME TIME. Just too much information to handle. It didn’t help me with facial recognition, but it did allow me to apply the rules I used for identifying individuals at greater distances than previously. Crowds became a confusing collection of

Tiled roofs became a collection of thousands of individual tiles, many of which had individual characteristics I couldn’t help noticing. I could see the corrugations on corrugated iron roofs, and the rows of nails holding them down. Disturbances in the rows (a nail missing, irregularly spaced or out of alignment) shouted out “Look at me!”

Sixty years on and and the same distractions still occur. What I have learnt is how to consciously push them into the background. Over the years I have got better at doing it and it probably takes less effort to do so. There are still times, especially leading up to and during a migraine where I find all the visual information overwhelming. It’s nice to be able to remove my glasses and move into a visually gentler and less harshly chaotic world where I’m not assaulted by detail.

While I mostly appreciate the details I seem to notice when no one else does, there are times when I wish I could simply not notice them in the first place – just like everyone else.

Thinking about the lockdown

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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