Another Spectrum

Personal ramblings and rants of a somewhat twisted mind


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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


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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.


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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 🙂


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The little things in life…

Sometimes the little things that one takes for granted can suddenly become huge issues.

Take for example my credit card. I’ve had a Visa card for decades, with the same number. I knew that number by heart, and it had a unique quirk: the number was such that it made an easily remembered pattern when typing it out on a 10-key keypad. In fact I memorised the pattern long before I remembered the actual number. Once every five years, I had to remember a new 3-digit CCV code, which I also had to update for online accounts, of which I have quite a number, but apart from that I gave the convenience of my credit card little thought.

All that has changed. My bank, in its wisdom, has decided to switch allegiance from Visa to Master Card and has issued me with a new credit card WITH A DIFFERENT NUMBER! If we can switch between telcos and keep the same phone number, why on earth can’t we do the same with credit cards?

To make matters worse, I can find no meaningful keyboard pattern to help me memorise that damn number. Hell, it took me more than a decade to learn the old one when I was younger than middle aged. Now that I’ve passed 70 and my memory isn’t as sharp as it was, how long will it be before I’ll remember the new one. I suspect I’ll be pushing up daisies, before that happens, in which case it’s not worth the effort of even trying to learn it.

On a brighter note, last week I revisited Countdown Supermarket during their “quiet time” and surprise, surprise! The pink/red lighting over the meat section had been turned off. Absolutely wonderful. It’s been so long since I was last able to browse the range of meat on offer, that I had almost forgotten what was available. And to be able to walk down an aisle towards the rear of the store without the need to avert my gaze is a pleasure I’m going to long remember!


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Quiet Shopping – the verdict.

The wife and I arrived at Countdown a few minutes after 2:30, and the difference was noticeable immediately. You enter the store through the fruit and vegetable section and there all the ceiling lights were off and the only illumination was that that came through the front windows and lights from the chiller cabinets around the perimeter of the section. Immediately, I was aware that there was no background music, and the checkouts were silent – no beeps at all. The chillers were still noisy and the noise of the refrigeration units in the nearby deli ahd specialty foods could still be clearly heard, but over all it wasn’t unpleasant.

Throughout the rest of the store, the strip lighting down the centre of each aisle had each alternate fluorescent tube switched off. It was still a little on the bright side for myself, but the wife found it most pleasant. One aisle had all the strip lighting turned off and the only illumination was from the adjacent aisles. This was perfect for me, but perhaps inadequate for some.

Unfortunately the warm pink/red illumination over the meat chillers seemed even more prominent with the lower level of lighting and it meant that I had to be extra careful where I directed my gaze when heading in their direction. As the meats take up half the rear of the store, if I was by myself, I would need to traverse the store in a series of loops instead of a simple up one aisle, down the next. Something like up aisle 6, down aisle 1, up aisle 7 down aisle 2, up aisle 8, down aisle 3 etc. However, I realise that in all probability, I’m the only person that’s affected by this type of lighting, and can’t expect Countdown to be aware of this condition.

On the whole I enjoyed the experience, and will make it a habit of shopping there at that time. I’m not sure if the checkout operators enjoyed it so much. The scanner beeps were so quiet, that they often had to check the till screen to be sure that an item had been scanned. The volume could have been turned up just a tad to make their work a little easier.

wheretobuy_logo5Congratulations Countdown. Your effort is most appreciated by this reviewer. You are now my favourite supermarket in Feilding!


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Quiet shopping

Sweet as! [Kiwi expression for “awesome!”]

Well, at least I hope so. Visiting the supermarket has seldom been pleasant for me. At worst it can be a migraine inducing and/or dissociative identity (autistic shutdown?) inducing experience that I would not wish on anyone.

In this town of Feilding, there are two supermarkets, and until recently New World was my Supermarket of choice. I avoided Countdown whenever possible, and it would take the considerable charms and persuasion, and occasional threats from the wife to get me to accompany her there. I never entered by myself.

However the world moves one whether one likes it or not.

New World moved to new bigger, brighter, but for me, most definitely not better premises. The acoustics are appalling, the lighting way too bright, and they’ve laid out the store in a similar manner to their opposition with the meat section along one wall at right angles to the isles.

I don’t know what it’s like in other parts of the world, but here, most supermarkets use warm red tone illumination to make meat products look more appealing. Unfortunately that lighting does trigger migraine attacks for me. And as it’s at the end of half the aisles in the store, I have to be very careful where I direct my view as I move along an aisle towards the rear of the store where the meat shelving is.

Why the “Sweet as!” at the beginning of this piece? Well, Countdown has just announced that as from this week all their supermarkets will have a quiet period each week specifically for folk with sensory issues: reduced lighting, reduced air conditioning, no background music, no public announcements (except in case of emergencies), the volume of the “beeps” generated by checkout scanners and registers will be reduced, no restocking of shelves unless absolutely necessary.

It’s only going to be for an hour each Wednesday between 2:30 PM and 3:30 PM but you can sure that I’ll be there. In fact I’m quite looking forward to it. I might even have some time to browse instead of the usual mad rush in and out.


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Aging and autism

Today the wife and I visited The Feilding Craft Market. I look forward to such events, but always with some trepidation. And as I age, the trepidation becomes more pronounced. I’ve always understood the risk of such events triggering a migraine – being indoors, they’re where:

  • it’s noisy –  the noises and voices of hundreds of people wafting in and out of range, swirling together, becoming single strands and then breaking apart into a myriad of sounds before disappearing again into the hubbub. Sort of like an audio fireworks display in close up. It takes a huge amount of concentration to identify one sound from another.

    Is that someone talking? To me? A stall holder starts a conversation with me and the words of a passing mother to her child become entangled into the sentences, rendering the stall holder’s message unintelligible. Which words belong to who? I force a smile and move on. Was I rude. I don’t look back.

  • the lighting is uncomfortable – at least at first. after a while it becomes unpleasant, and eventually almost unbearable. The colour of the artificial lighting is wrong. It’s too white. The shadows are wrong. Their edges too sharp. Objects project more than one shadow. Textures and surfaces become exaggerated in the light, more pronounced somehow and become unpleasant. Perhaps a bit like how some people react to fingernails being scraped across a chalkboard. I squint in a vain effort to lessen the effect of the assault.

  • the air is thick and stifling – I can feel it as I drag it in and out of my lungs. It’s heavy. The smells of human bodies mingle with soaps, aroma oils, leather, wood, salami, coffee, herbs and spices. One moment in pleasant combinations, the next in combination that induce sensations of nausea. A woman passes with perfume so sickly sweet, and the food products in the stall in front of me turn from appealing to disgusting in an instant. I move on quickly as knot forms in my stomach.

  • it’s full of chaos and movement – People in a constant state of movement, avoiding each other with apparent ease, except with me, where we both end up doing a semi synchronised dance before one or other of us manages to get sufficiently out of step to allow a passing maneuver. Even worse is trying to overtake someone moving in the same direction but at a slower pace. I swear overtaking on a busy highway is less stressful and can be accomplished quicker and with less effort.

    Each and every movement is a distraction. I keep loosing my place as I attempt to read an information poster. Movement in my peripheral vision constantly causes my eyes to turn towards it. I look back as the poster. Where was I? Half way down? Never mind, the distraction has caused me to forget not only where I was but what I have already read. Start from the beginning again. No idea why I wanted to read it anyway. I move on as the stall holder approaches.

  • I loose the wife – again and again. Some people might say the place is a sea of faces. To me it’s a sea of eyes and noses, mouths, chins and hair. Which combination belongs to the wife? She’s 35 cm (14 inches) shorter than I am, so can eliminate most, but of course she’s usually hidden behind someone else. I see a hand waving above the sea of hair. It’s attached to a sleeve of the right colour, so it’s probably her. United again – at least for a few stalls.

  • there’s no personal space – While I recognise that my personal space might be slightly considerably larger than most, it seems that everyone else is willing to forgo theirs at such events. I’m not. I stop to watch a demonstration. Someone moves in beside me. Their arm occasionally brushes against mine. Far too close. Then I sense someone close behind. Definitely closer than 60 cm (2 feet). Time for a quick escape.

I managed to hold it together. I even cracked a few jokes with the last stall holders as they packaged up the dozen craft beers the wife decided to buy on the way out. I’d practiced a few jokes specifically for circumstances that would likely occur at such an event, and apart for the one that I had to ad-lib slightly and ended by being tongue-tied, they appeared to have the intended effect.

One aspect of aging that is become more apparent is that stamina becomes less abundant. While I suspect events such as the craft market have always been just as stressful, my ability to endure them has become less. – particularly over the last few years. The almost two hours we spent there was absolutely exhausting, and I think if the wife had wanted to spend longer there, I would have had to leave her there by herself.

When we arrived home, the tremors began, my hands shaking violently as I struggled to pick up snack and a drink. I felt very light headed and it took an extreme conscious effort to complete the steps necessary make myself an espresso coffee. The coffee beans go into the grinder, not the cup. The machine won’t heat up unless it’s switched on. You get the picture.

Very quickly I felt very tired and decided to lie down for a short time while the bread maker kneaded the dough. I woke up almost six hours later and the dough had expanded to the limits of space available in the bread maker. What’s good is that the sleep aborted a pending migraine. What’s not so good is that it won’t do anything good for my sleep pattern, such as it is, nor for the quality of the bread that has just been baked.

For five decades I had assumed that everyone experienced crowded environments in much the same way as I do, but that for some reason other people were less affected by the experience. Somehow they managed to overlook or ignore the discomfort that I believed they too experienced.

Since my autism diagnosis, I have gradually come to the realisation, that most people experience such events very differently than I do. They don’t find crowded spaces disorienting. They enjoy the social interaction. The sights, sounds, smells and bustle are stimulating and enjoyable, not overwhelming and torturous. We might live in the same physical world, but the way I experience it in its entirety is very different. This is especially so when we consider the social environment that, as human beings, we all must share.

The medical profession consider autism a disorder, and perhaps it is, but I and a majority of autistics perceive it as a difference, and in time I hope we, in the neuro-diverse community, are proved right. After all, only fifty years ago, homosexuality was considered a disorder by the medical profession, and some sections of society still consider what comes naturally to most people is wrong for gays.

What is becoming clear to me is that many autistic traits that most neurotypical people perceive as deficits are perfectly normal in light of how autistic people experience the environment around us. In a social order designed by and specifically for the autistic community, a great many neurotypical traits would also appear to be deficits.

In societies such as that we have evolved in Aotearoa New Zealand, cultures have to some extent integrated, but more importantly they have become intermingled, retaining their distinctiveness, while becoming part of a larger whole. This provides a more vibrant, rich and diverse society where we learn to appreciate not only our similarities but also our differences.

It’s true that in order to make it work for all, the dominant Pākehā culture must make significant adjustments, and we are moving along that path, although not as fast as it should. Some find it very uncomfortable. Likewise I’m looking for adjustments within the dominant neurotypical culture to allow not only the neuro-divergent community to exist (and there are powerful influences trying to eliminate it), but to encourage it to prosper. In the end we’ll all be richer for it.


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Why did I say?

I have at any one time, a number of unpublished posts on WordPress (currently 23 29). Some of these may eventually be published, but the majority are used by me as sounding boards where I write down and develop thought and feelings that exist in my mind but lack words or visual context. In a way, I’m translating my thought processes into a form that I might be able to use in dialogue with other people.

Outside of the blogosphere, I do exactly the same, except the thought processes are kept in small mental “notepads” where concepts have been converted into streams of words at various levels of completeness. During most of my waking hours, I’m constantly moving from notepad to notepad revising the content so that I can recite it should a need to communicate with fellow human beings arise. I find speaking “off the cuff” difficult at the best of times times, even with friends and family. I rely to a large extent on finalised or nearly finalised notepad scripts. I can really put my foot in it if the only appropriate script hasn’t been well prepared.

Quite simply, I don’t think in words or images, yet I’m unable to communicate with fellow humans without making an effort to convert “thought blobs” into strings of spoken or written words, otherwise known as sentences and paragraphs, or larger objects such as a blog post or opinion piece. I struggle with conversations because of the necessity to convert incoming words into “thought blobs” and then to reverse engineer my thoughts back into word streams. Social interactions require almost instantaneous conversions in both directions and although I can convert incoming word streams into thought processes reasonably quickly (providing there are no other word streams within earshot, or some other distraction) and with moderate accuracy (providing there are no other word streams within earshot, or some other distraction), reversing the process is much more difficult, not to mention exhausting.

While most of the unpublished WordPress articles start out with the intent to publish, the process of putting words to what I wish to express, exposes a “weakness” in the way I process ideas. That is I find it very difficult to put forward an argument in a way that is meaningful to those who don’t process thought in the same way as I do.

Some articles simply stop part way through, waiting for the moment where I can add flesh to the bare bones of what I have written. Sometimes, the effort of translating thought into words reveals flaws in my logic, but not necessarily providing me with a solution. These articles will sit there until either I realise the premise is not worth considering and I delete the offending article, or I find a solution and publish after considerable revision.

Most posts languish because I realise I’m unable to do the translation from thought blobs into meaningful dialogue. A bit like running an automated translator over some complex idea presented in a language that has absolutely no relationship with your own. For example here’s the previous paragraph after it was translated into another language and back into English:

Part of this information is just waiting for conversion at any time period beyond the quality of the bone with different answers. Sometimes, someone wants to understand the cut word, but does not provide a solution. In this approach, Until I understand this data, I will pull the information or find a solution after a constructive publication.

Sometimes, when I review what I have previously written, especially if it’s largely abstract, philosophical or religious in nature, it makes about as much sense as the translation above. There’s a few unpublished articles which currently are about as understandable as the example above, but a few days from now those article might make sense and others might appear as nonsense to me. What others might make of them is another matter.

Even this post, which I’ve published as a consequence of something I did a few hours weeks ago, consists mostly of content for an unpublished post about how I convert the way I translate my thought processes into English, and the fact that even though I’ve just recently turned 70, I still struggle with the process.

Perhaps my biggest issue is that language is linear – within sentences, within paragraphs, within stories. While perhaps the best communicators are those who are linear, I struggle with the whole concept of linearity. For me, there is no beginning, middle or end: there’s just a whole, (or if I’m confused about something, there’s just a hole).

Another issue is that I don’t see anything in absolute terms. This gives rise to some people interpreting what I say/write as being vague. Ashley of The Boastful Blasphemer is convinced that I’m “the most wishy-washy, waffling, non-committal, vague, imprecise, escape-hatch-leaving ‘debater’ I’ve ever talked to“. While I completely disagree with the “escape-hatch-leaving” part, there might be an element of truth in the rest. There are no absolute truths. Every fact is open to interpretation (even if we don’t realise that is what we are doing).

I have at times stated that I have no notion of time. This is probably somewhat inaccurate. I understand the notion of time – I am unable to experience time. Most people seem to remember events in terms of chronological distance. They seem to instinctively know approximately how long ago personal experiences occurred. I have absolutely no idea. I’m only able to remember the relative significance of various events. Important events are close while less important events are distant. This even applies to the present moment.

For example when experiencing a migraine, everything occurring in the “now” is distant and may be further away than events that occurred even decades ago. In such circumstances the past is more “real”, and certainly more immediate than the present. After the migraine is over, everything I experienced during the attack remains distant. A good example of this might be the first time I saw my first grandchild. I had a migraine at the time. I have absolutely no memory of the actual event. The only “memory” of the event is the description provided by my wife and daughter several years later.

This brings up another factor: With a very few exceptions, I have no visual memory of past experiences, nor can I create a visual picture of an event. For this reason, I find it difficult to distinguish between events I experience directly and those described to me by other means. The above incident with my first grandchild is one example. For a while I thought I was able to describe the incident from my own experience. Later I realised that there were discrepancies in my “recollection” that turned out to be the way I interpreted the event as described by my wife and daughter.

Here’s another example. My daughter’s home has tall picket fence at the front, about as tall as I am, nearly as old, and unpainted. Now you know as much about her front fence as I do. I probably could not identify it from a photo lineup of similar fences any better than you could with the description I’ve provided. Oh, there’s a row of trees and bushes on the property side of the fence. So if only one photo matched that description, and one of the photos was definitely a picture of my daughters fence-line, then that would be the photo I’d pick. But then knowing the facts that I’ve just provided, you would be able to do exactly the same thing. And you’ve never seen the place.

Fortunately there’s no other property in the same block that matches the description above, so finding it is not difficult. If there was a similar fence-line, I’d have to memorise a different set of parameters that made the daughter’s property uniquely identifiable.

What some of you might be able to do is create a mental image of the fence-line I’ve described. While it’s very unlikely to be an accurate image, it’s something you can “see” in your imagination. I can’t. I rely on the information I’ve specifically set out to remember. Specifically, there is a thought blob that when translated into English indicates last block in street, on left, picket fence, my height, my age, unpainted, trees behind. There is no picture associated with that description.

In the local New World supermarket milk products are located on shelving at the back left corner of the store. It is the south west corner of the store and diagonally opposite the entrance, which is at the front right, north east corner of the store. Now you know as much as I do, and if I were to place you in front of the supermarket, you could find your way to the milk section just as easily as I can. What I can’t do is describe what my eyes have seen when I visit.

This lack of visual memory can lead to potentially embarrassing moments such as the one recently described in I wonder what she wants? I learnt a long time ago to be careful of relying too much on distinguishing personal features. It’s rather embarrassing to discover the person you’ve been talking to for the last ten minutes is not who you thought she was, but a total (but friendly) stranger.

I’m not even immune from failing to immediately identifying my wife, and we’ve been together for 48 years. When we go out, I make a note of what she’s wearing. Remembering that information, along with the fact that she’s likely the shortest oldish person of Asian appearance is usually sufficient for a visual identification. While that description is reasonably reliable here in Aotearoa New Zealand where approximately one in eight people are of Asian descent (and around one in twelve in our hometown) , I discovered it wasn’t so helpful in Japan where the ratio is more like 999 in 1000 are of Asian descent, although she is still significantly shorter than average, even in Japan.

A further visual clue is her gait. It’s rather reminiscent of how a cowboy might walk after a week in the saddle. While it’s not exactly what could be described as elegant, it’s a godsend when it comes to identifying her when in this country, but again, in Japan not so much as many women of her generation, especially from farming families, walk in a similar manner

So how do I recognise people? Mostly by voice. I’ve found that to be the most reliable for me. In fact, as there are no other forms of distraction, I can usually recognise someone on the telephone faster than in a face to face situation. If I happen meet someone I know while I’m out and about, there’s a good chance I won’t recognise them unless they speak to me, and even then, the distractions of sights and sounds might be enough to delay recognition for some time. At home or in the office, there’s much less distraction, and I can usually recognise the caller before they’ve identified themselves.

As I was diagnosed as having a 90% hearing loss when I was seven years old, I wonder why I am able to recognise voices so well. But that’s a conversation for another time.

I know face blindness is more common in autistic people than is the general population, and I wonder if a lack of visual memory and thought without words or images are also more prevalent. To date I haven’t seen any discussion of this, but perhaps its something other autistics experience and haven’t realised that it’s not what most people experience.


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Numbness of mind

I was seated, but I could not draw my knees together. The light was white, bright, very bright, painfully bright. Behind me there is movement but I’m unable to turn my head to see. It does not respond to my wishes. I hear soft sweet sounds that might be voices, but I can’t be sure. They are in stark contrast to the oppressive mechanical noises all around. I know I am required to lean forward, but I don’t know how I know. I start to lean forward and immediately feel a hard cold surface against my chest. I sense air movement on my back and realise my top half is not clothed. My arms are lifted and draped over the top edge of the surface. It is very uncomfortable but I know I must not move. How do I know that I wonder.

I feel rubbery fingers moving over my lower back concentrating on the spine area. Again, I sense rather than hear an urging that I must relax even if I’m uncomfortable. My head is thumping, agonizingly so, and that light hurts, even with my eyes closed tightly. I want to escape, but I am unable to do so.

A dull ache starts in the area of my lower spine, at or slightly below waist level. It grows in intensity, slowly but surely. I want it to stop but I don’t know how to say the words. I hear a groan. Is that coming from me? I’m not sure. The ache goes away, then returns, different but the same, and maybe not in exactly the same spot. I’m not sure. I sense shadows moving around me even with my eyes shut. It’s too painful to open them so I remain frozen where I am.

A sharp pain on my inner thigh, a little above the knee . A few more stab of pain, each in a slightly different area. Like I imagine a red hot poker being pushed through the skin, but there is no burning smell, only the sensation. I keep trying to find the words to tell it to stop, but the words are elusive. They tease me then disappear.

The ache on my spine disappears momentarily only to return. The ache feels different but I don’t know in what way. Is it in the same spot? Maybe, maybe not. I feel more stabs of pain, this time perhaps more like white hot needles. They are near my groin. Suddenly the white hot needles move from groin to scrotum. I realise I am no longer sitting. I am standing.

The sweet soft sounds that may be voices sound agitated. They want me to sit again but I don’t hear any words. Then a new sound – deeper and commanding. Is it another voice? Who is it directed to? I do not know. It does not matter as I don’t understand it. The ache in my spine has morphed into a pain. When did that happen? I sense pressure being applied to my shoulders, but can’t feel it. I just know it’s there. I lower myself slowly.

I realise that I’m straddling a chair backwards. My chest meets the cold hardness of its back. The pain in the spine remains and is soon joined by a return of the ache, although not as intense as before. I drift into nothingness.

I feel myself being lifted. Rubbery hands under and on my arms. Green legs on one side, blue, or maybe white on the other. Not sure. The glare is painfully bright. I cannot see their feet. Do they have feet? It seems they’re gliding. I’m half walked, half dragged then manipulated onto a bed. I think it’s a bed. I feel it rising. Then it stops. Some bars rise up beside me. I’m imprisoned. The nothingness returns.


What I describe above was not a nightmare, nor a scene from a horror movie, although I wish it was. It was very real, and every so often the memory returns to haunt me. You could be forgiven for thinking that I described an alien abduction. Looking back on it now it doesn’t seem too much different from the description of some so called abductions, but I’m yet to be convinced of the reality of such events.

Yet the experience I describe above was real.

It occurred while I was hospitalised for a week during a severe migraine attack. I have nothing more than fragmentary glimpses of that time. The actual event described, as I later learnt, was an attempt by hospital staff to obtain a sample of spinal fluid. They failed. I have no recollection of any emotional state during the episode, hence the title of this post.


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Why it’s curmudgeon day

Why the grumps? I have had two nights of fitful sleep, among other things. A little over three months ago I decided to try another regime of Migraine medication as I was finding I was down to less than 10 migraine free days each month. And even on those days I usually woke with migraine-like symptoms that would take two to three hours to pass.

My GP suggested we try Propranolol again as it has been more than 10 years since I last tried it. Unfortunately neither the doctor’s notes nor my own record why I stopped taking Propranolol all those years ago except that the side effects were unacceptable.

As many people on the autism spectrum will tell you, the effectiveness and side effects of many medications can be significantly different than would be the expected outcome for neurotypical people. In the case of migraine medication, I have found the effectiveness of most treatments have been negligible, and in every case, the negative side effects considerably outweigh any benefits gained.

This is proving to be true with Propranolol. I’m having up to 20 migraine free days each month, but the side effects are getting to me. I can put up with such minor inconveniences as feeling my body has aged 10 years in the last three months, or the return of Raynaud syndrome if it means I can halve the number of days where I can achieve little or nothing. I can even put up with the itching skin and distorted night vision at a pinch, but there are other symptoms that I’m unwilling to live with long term.

Perhaps the most unsettling side effect is a constant feeling of unease, but about what, I’m not sure. I’m also aware of having vague “memories” of events that I doubt very much happened, and I’m unable to tell if they’re recent dreams, distant dreams, hallucinations, or real events sometime in my recent or distant past. They are so fragmented and vague that they make no sense. However my “recollection” of them feels recent. When or if they happened, they don’t seem to be upsetting at the time. In fact I think some might be the opposite. But in the cold light of day, when I’m fully lucid, they make me uncomfortable, but I don’t know why.

Since starting Propranolol, I’ve found my concentration and short term memory has left me. This is a normal symptom for me during a migraine attack, but it’s worse with medication than without it, so what’s the point of taking it?

One of the less common symptoms associated with my migraines is that I sometimes suffer from depersonalisation or derealisation just before or during an attack. Sometime it can extend to dissociative amnesia. In hindsight I’m convinced that this is a much more frequent symptom during those times I have been taking preventative migraine medication.

That experience of sometimes watching myself from a distance and feeling I’m an observer and not an actor is something I seem to have more frequently since starting the medication, even when I’m not experiencing any other migraine symptom. I seem to be achieving less in my 20 migraine free days now than I was in my 10 migraine free days less than four months ago.

Propranolol is not a medication one can safely stop cold turkey. It’s time to arrange with my doctor a plan to wean myself off them.