Another Spectrum

Personal ramblings and rants of a somewhat twisted mind


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30th anniversary of Needle exchange program

One of the country’s most successful public health initiatives, the needle exchange program has become a network of hundreds of outlets. The first exchange outlets began operating in 1987 following legislation earlier that year that legalised the practice. The early adoption of the exchange program is one reason why AIDS/HIV is low within the intravenous drug using community in Aotearoa New Zealand compared to similar countries elsewhere. Thousands of lives have been saved by the program.
//players.brightcove.net/963482464001/HJiGOMree_default/index.html?videoId=5682891395001

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Stupidity knows no bounds

No, I’m not referring to Trump, although he could be used as another example. I’m referring to myself. I’m kicking myself in hindsight and calling myself a bloody idiot.

So what did I do that was stupid? I drove to a local fast food outlet to pick up dinner for the wife and myself on Friday evening. No, I’m not referring to the consumption of fast food occasionally as stupid, nor to the fact that I drove instead of walking. I chose to leave home when it was potentially unsafe for me to do so, and I chose to drive at a time when I posed a danger to myself and others.

We all know that alcohol impairs one’s ability to drive safely, and most of us won’t drive after drinking, either because we don’t want to put ourselves and others in harm’s way, or because of the repercussions that will be heaped on us if we get caught.

(Drink Dive ad from 2007)

What many people aren’t aware of is that a migraine can seriously affect one’s ability to drive safely. Even fewer people realise that driving can be impaired up to three days before a migraine headache occurs.

Not every migraineur is impaired this way, but for some, cognition is impaired before the headache stage: during the prodrome and aura stages. I fall into that category.

Migraine goes through four possible stages: prodrome; aura; attack/headache; postdrome. Not every stage occurs in every migraine attack. For those unfamiliar with the stages, a very brief description follows:

Prodrome: Begins hours to days before the attack stage. Experienced by about 60% of sufferers. Symptoms can include: mood changes such as depression, irritability or euphoria; food cravings; sensitivity to light , sounds and smells; fatigue and yawning; frequent urination; muscle tightness.

Aura: Typically lasts for up to an hour, but in rare case can last considerably longer. Experienced by one in 5 migraineurs. Symptoms can include: visual disturbances such as zigzag lines, stars/strips/spots, scintillation, blind spots, and tunnel vision; Numbness; loss of motor skills; confusion; Alice in Wonderland syndrome; loss of spacial perception; vertigo; memory loss; visual and auditory illusions; aphaia; disorientation.

Headache: Typically lasts hours to days. Occasionally migraines can occur without this stage. Symptoms include: severe throbbing headache, sensitivity to light, sound and smells; nausea; vomiting.

Postdrome: Typically lasts hours to days. Symptoms include a “hungover” feeling; symptoms similar to the prodrome stage.

They may appear to be 4 distinct stages, but in my case, the transitions can take hours and there’s considerable overlap of symptoms. I’m unable to distinguish between the prodrome and aura stages unless the visual clues kick in, and sometimes I recognise the prodrome and aura stages only in hindsight. And that is where my stupidity arose. The clues that I was in the prodrome stage of a migraine were staring me in the face, but I failed to notice them.

I am very mindful of the potential hazards that I might be confronted with during a migraine, and I tend to err on the side of caution. While I can accept a higher level of risk for myself that results from my migraine symptoms, I’m not prepared to place that risk on others. Before I undertake any activity I normally take some time to consider the possibility that a migraine might be just around the corner, or even if a silent migraine has already arrived. Except Friday.

I drove while visually impaired and initially didn’t realise that I was. To make matters worse, when I realised that my vision was impaired, I drove home – an executive decision I should not have made.

So how did all this play out? The first clue surfaced on Wednesday. We decided to have sausages for lunch and I offered to drive to the supermarket to pick some up. That was the first clue. “How so?” you may ask. Well, I’ll tell you.

We have no idea what are the triggers for my migraines are, except for one: the red tone lighting frequently found over the meat section in supermarkets. It takes less than a minute under those lights before I start to feel light headed and within a few minutes I am completely disoriented to the point where I can’t find my way to the checkouts or exit. In fact I exhibit symptoms that can be confused with a stroke. When we first discovered this phenomenon, I first I thought it might have been a psychological reaction to seeing all the meat, but when we realised that it was related to specific shops, but not others, we eventually were able to pin it down to the lighting.

These days I avoid supermarket meat sections like the plague, and in stores where the meat section runs along the side of the shop at right angles to the isles, I avoid going to the ends of the isles, and keep my eyes diverted away from the meat. So what possessed me to even offer to pick up the sausages? And why didn’t the wife pick up on it? She knows what happens  when the lighting triggers an attack even better than I do. She has to manage me while I’m kind of spaced out and not totally aware of the situation. Clue missed.

At the supermarket I had already picked up the sausages before it dawned on me what I done. To say that I was concerned is an understatement. I was by myself and if the lighting triggered an attack, I could be in an ambulance and on the way to hospital with no choice in the matter. It’s happened before. Several times.

What I should have done when I realised my mistake was phone the wife or another nearby family member about what had happened and for them to come and get me. I didn’t. I hastily paid for my purchases and sat in the car waiting for the worst to happen. That was a stupid thing to do. If an attack had come on, I might have decided to drive, but I would not have had a clue where I was going. I wouldn’t have known where home was. Clue missed

I waited for nearly ten minutes before concluding I was lucky on this occasion, so I drove home. It was there that I realised that I had made a poor choice of sausages. One pack was Angus beef. No problem there, but the other pack was venison and herbs. To the wife, venison equals Bambi. Because of her sensitivity over this, I never bring home food containing venison. Clue missed.

At 2 am on Thursday morning I got up and made myself a couple of sandwiches. I haven’t done that since my twenties. I felt really hungry. I never feel hungry except before the onset of a migraine. It never occurred to me that this might be one of those occasions. Clue missed.

Later on Thursday I drove into town on some errands. I drove for the fun of it. Heavy acceleration and braking. Feeling the tyres grip under fast cornering. It was exhilarating. I don’t drive like that. Well not for the last 45 years. Clue missed.

I chatted with every one I met and enjoyed it. I have no idea if it was reciprocated. I didn’t care. Normally I converse as little as possible with persons I’m unfamiliar with. Experience has taught me to be cautious as I’m completely unable to read body language and only the most basic of facial expressions. I usually can’t read between the lines. I’ve learnt the hard way to carefully measure what I say and how I say it. But not on Thursday. Clue missed.

I went to bed four hours earlier than usual. I was unable to stay awake. Clue missed

In the very early hours of Friday morning I got up and made myself some sandwiches. Second night in a row. Clue missed again.

On Friday I worked on a number of Websites, but I frequently forgot HTML and CSS coding I use regularly and had to resort to cheat-sheets. I frequently found myself editing the wrong files. Clues missed.

Late Friday afternoon, I found that words were disappearing off the screen, or lines of code started undulating in front of my eyes. I knew I had to stop. I put it down to eye strain. Clue missed.

I this point I should have been fully aware that I was well into the aura stage. The sunlight was very bright, the shadows very dark. The face of the wall clock was blank. We discussed what to have for dinner. I kept tripping over words. I Couldn’t think of the words Turkish kebabs. We “agreed” on KFC. Clues missed.

There’s a deep dip where our driveway meets the street and I normally cross it at an angle to avoid the front air dam scraping the road. Except then. Oops. Clue missed.

I drove to the kebab shop. Wrong place. Headed for KFC. Clue missed.

At KFC the illuminated menu above the counter had pictures but most of the words kept shimmering in and out of view. And I couldn’t remember what we had “agreed” to purchase. It was then that it finally dawned on me that I was in the aura stage of a migraine and that I should get home as soon as possible. Decided to telephone the wife to confirm what I was supposed to order. No phone. I never go out without my phone. Decided to order what the wife probably wanted, No problem ordering the Hot Wings, but I could not think of the name for a Zinger Burger. Finally I resorted to describing what it was.

By the time the order was ready, everything before my eyes was shimmering, and my peripheral vision was all but gone. I should not have driven home. I could no longer see the speedo and other dashboard instruments and still it didn’t occur to me that I should not drive. I can remember thinking I must hurry home before it got worse. So I did hurry. How stupid can one get?

If someone had stepped out into the road in front of me, (a) I probably wouldn’t have seen them, (b) I would probably not have known how to avoid them if I did see them, and (c) even if I did, my reaction time would have been too slow. As it was I didn’t see a vehicle approaching from my right at one intersection until I started to move into it. In fact I’m very lucky to have made it back home in one piece.

Today I’ve been re-evaluating all the procedures the wife and I have developed over the last decade or so to prevent exactly what happened yesterday. It had been working very well up until now. I still don’t understand why so many clues were missed. I am very angry at myself and to a lesser extent my wife. Was it a one off slip of our guard, or have we become complacent because it has been working so well? Or are we both are loosing the ability to recognise the signs.

I really don’t want to hand in the keys for driving just yet. My mother drove until she was ninety and I’d like to think I can do the same. But yesterday has given me a scare.

 


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Autism is nothing to fear

Over on the silent wave, Liana makes a plea not to demonise autism. Get to know us. What makes us different is nothing to fear. Look, I am surrounded by non-autistic people, and while I might never understand their way of seeing the world, I see no reason to be afraid of them, or their condition. The same applies in reverse. The only thing to fear is the public perception of autism, not autism itself.

I live in the US, where the predominant feeling surrounding the autism spectrum is fear. Parents decline to vaccinate their children because because they’re afraid they’ll wind up autistic. Parents, I hear you, on a certain level. Some children really do react badly to vaccines. I’ve heard too many stories, even from people I know–reasonable […]

via Autism is nothing to fear. Are you scared of me? — the silent wave


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Theory of mind(reading)

Theory of Mind is a concept that autism “experts” have come up with, but as is amply illustrated in Laina’s post, one must ask whether it’s the autistic or the expert that lacks it.

the silent wave

Realizing that you’re autistic when you’re an adult means you get to do a lot of searching. This takes multiple forms – soul-searching, Google-searching, memory-searching, and often, people-searching (the journey of finding others just like you).

In my internet searching, I tripped over a staggering number of tidbits that clicked my entire world into place. It was like being given the instruction manual to my brain, and having it translated into my native language.

There was one particular concept, however, that did not click in line quite so easily: Theory of Mind.

What the hell was that, this “Theory of Mind” of which so many speak? The term stoically hides any further information.

Many a mention, nary a definition. At least, not a definition that helped much.

At first, my Inner Smartass came out. ”Well duh–of course we have minds. That’s not a theory!”

Har-har. 😉

It took me…

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Sensory Overload

I’m sometimes asked what it feels like to be an Aspie. I don’t know, as it feels perfectly normal to me. I’ve been one for almost 68 years, and will remain so for the rest of my life. However, I sometimes wonder what it would be like to not being an Aspie, then shudder at the thought. You’re all so strange!

However there is one non-autistic trait I wish I did have, and that is the ability to filter incoming stimuli. This is simply because I am required to inhabit a world dominated by people who take sensory gating for granted. Most people on the autism spectrum are prone to sensory overload to some degree. I certainly am, and I think I might be able to explain it in a way that make sense for those of you who don’t experience it.

email_icon_crystalLet’s imagine that your job is to respond to all email sent to your office. If it takes on average about ten minutes to attend to each email, then over an eight hour working day you can process about fifty emails. So the forty or so that arrive on a typical day is a walk in the park. Sure, there will be times when they arrive in quick succession and some may require more time than others to process, and you may end up with five or perhaps ten in your inbox awaiting attention. You simply prioritise the messages and in quick order you’re back to an empty or near empty inbox.. However…

What you don’t see is all messages that have been sent to the office email address. As well as the forty messages you see, there are another 360 that have been caught by the the Spam filter on the office mail server. What would happen if the filter suddenly stopped working? Instead of processing forty emails per day, you’re now faced with processing 400 per day. That’s an average processing time of one minute and 12 seconds per message if you want to leave the office at your usual time. Sure, some of the messages will obviously be Spam, but a great many will not be so obvious at a cursory glance, and will take a few minutes to check their validity. Are you beginning to feel the pressure?

There’s one other bit of information that will really put the heat on. Your mailbox has developed a software fault and can hold, at most, twenty messages. Any more than that and one of two possibilities happens. Either, the new message pushes one of the existing messages out of the inbox where it simply disappears, or, it merges the new message with one of the existing messages, resulting in absolute gibberish. It’s not possible to predict which message will be pushed out or merged, nor which of the two possibilities will occur. So when your inbox contains nineteen messages and another thirty arrive within one minute, you know you’re in deep doo-doo.

Your sensory gating works in a way similar to the Spam filter. Anything that is irrelevant is stopped at the gate. You only have to deal with the important stuff. There are moments during the day when your “inbox” gets kind of full as you struggle to cope with two kids that won’t stop bickering, while a third has just taken a tumble off the shed roof and possibly has concussion and a broken arm. Meanwhile the dog has just thrown up on the new carpet in the lounge, and you discover the phone’s been disconnected because your spouse forgot to pay the bill last month. But on the whole you cope quite well, knowing that your “inbox” can hold hundreds or thousands of messages at any time.

On the other hand, I’m struggling with no Spam filter and a restricted “inbox”. My partner and I go to a restaurant for dinner. She’s wearing a broach that catches the light every few seconds. Each time it does, I receive a new message in my “inbox”. I ask her to remove the broach. She refuses, The candle on our table and the table on the left have tea light candles. Each time they flicker, I get a new email I blow out the candle on our table. My partner comments that that was very romantic deed. Is she being sarcastic? How does one know?

The table on the right has one of those confounded fake candles with an electric flame. It flickers incessantly. Each time it does, I get a new message. In the background, there’s piped music with a vocal track. Each time I hear recognisable word, another message is sent. At the table behind me there’s at least two conversations going on. Each time there’s a recognisable phrase, I get a new message, The same thing is occurring with the tables to our left and right. Each click of utensils on crockery anywhere in the room creates a new message. And then there’s the constant toing and froing of patrons and serving staff, sending multiple messages each time they cross the floor. And I haven’t even included the stimuli I am receiving from the food or the many messages that result from contact between my skin and the suit I’m wearing. One of the waitresses is wearing shoes that squeak (am I the only person hearing that?) and my partner thinks I’m being distracted by the waitress. She’s right, but the reason for the distraction is most definitely not what she thinks. It’s those darned shoes. The right one makes a different sound to the left. The result is a sort of sqeeeksquick, squeeeksqick, and I get another email with each squick. I sense my partner is not happy with my distractedness, but to what degree I have no idea. My inbox is now overflowing, and I have no clue as to how many of the messages containing her half of the conversation have been lost, but I’m sure some of those messages have merged with the conversations going on around us. How else could “imdemnity clause” occur in the same sentence  as “salted caramel fudge for desert”? Someone is wearing perfume and it’s making my head spin, not to mention my stomach churn. Each spin and churn results in another message. And we’re still deciding what to order from the menu…

All I want to do is run. But stay I must.

I’m wired to process fifty messages a day – just like you. But whereas you only have to process forty on a normal day, I’m faced with processing four hundred! Unlike you, I wasn’t given a Spam filter.

 


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Epidemic or pandemic?

Up until the 1980s Allism was unknown. Since then it has spread rapidly and now it’s acknowledged that perhaps as many as 49 out of 50 people might be allistic. It affects women more than men. With such a high prevalence, it can’t be too long before this condition is recognised as a pandemic.

People with allism are likely to make decisions based on emotions, either their own or those of another person, rather than based on sensory input and rational thought. When it comes to group decision making, the more allistics involved, the more difficult it is to rationalise the outcome. Two very recent examples of this have been the Brexit result and the election of Donald Trump but it can happen with smaller groups such as seen at sports events too. This is due to the mob effect of allism

The Allistic Mob Effect

Special problems occur where a group of allistic people interact with each other. Emotional states, once introduced to the group, get reflected back and forth between allistic people, in a feedback loop. With few or no non-allistic people to provide a damping effect, it is possible for the emotions passing among the group to become significantly amplified. Any change of mood can spread rapidly through the group, like a highly contagious disease, affecting all the allistic people as one.

This leads to a mob effect, where the entire group of allistic people experience emotions that are unusually strong and are the same as what the rest of the group is experiencing. The group acts as one emotionally unbalanced and highly suggestible mind, and may perform acts that no individual member of the group would desire when not affected by the mob.

A Background To Allism

Allism is a debilitating neurological condition which adversely affects emotional stability, sensory perception, self-awareness, attention, and many other areas of mental function. It is a developmental abnormality, arising from congenital neurological defects that affect infantile mental development. The effects are lifelong, and there is no cure. However, despite the wide-ranging effects, sufferers superficially appear normal, and can partially compensate for their deficiencies to lead nearly normal lives.

Because of the superficial normality, allism has only been recently identified as a pathological condition. It has turned out not to be a rare condition; indeed, it is beginning to be recognised as alarmingly prevalent. Yet public knowledge is slow to catch on to these developments. There has been little research so far, and allism is still almost unknown to the general public, and even to mental health professionals.

Because of the lack of common recognition, allism is rarely diagnosed. Indeed, most sufferers are not merely undiagnosed but may be completely unaware of their condition. As understanding of allism improves, it is expected that many people’s eccentricities will turn out to be related to allism.

Combating Allism

In order to combat the allism epidemic, it is vital that parents watch out for the signs. Some common signs are:

  • Playing mindless “pretend” games
  • Overwhelming desire to be touched or held
  • No desire to be alone
  • Talks excessively about feelings
  • No “special interests”
  • No interest in routine
  • No repetitive behaviours
  • Little to no response to strong lights, smells, noises, tastes, or textures
  • Doesn’t repeat words or phrases
  • Fixation on eye contact

If your children show any of the above symptoms, please get them evaluated so that they can be forced to assimilate receive treatment earlier.


In case anyone fails to realise the above post is an attempt at satire, “allism” and allistic” are terms used by the autistic community when referring to non-autistic people and the unempathetic manner in which they treat autistic individuals, and the autistic community.

Thanks to Allism Speaks and Cure Allism Now for parts of the above post.


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Gaslighting

Although I had a supportive family that considered me “quirky”, “different” or “socially clumsy” and valued me as a person, the same can not be said for the rest of society, which often gave me the impression that I was wrong, broken, or backward. I am very grateful that those who are important to me have always accepted and valued me as I am. As a consequence I never found myself in a position of not liking myself. Even so, discovering I was on the autism spectrum felt like I had found the “on switch” to allowing me to be fully me. Many people on the spectrum are not as fortunate as I have been. Is it any wonder that so many people on the autism spectrum suffer from depression and other mental/emotional disorders?

Being an undiagnosed autistic has many challenges. When you compare your reactions to things with other people’s, you feel like you’re getting it wrong. When other people take things in their stride, and your brain feels like it’s expanding inside your skull to the point you can’t think, then you feel like you’re overreacting. And […]

via Gaslighting — Autism and expectations

WoW – a spectacle

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Like many people on the autism spectrum I am hypersensitive to sensory input – especially visual and audio input. This puts some events out of my reach. Shows with flashing lights, pyrotechnics or loud music can trigger severe migraines that can include fuge states or display symptoms that look so much like a serious stroke that even doctors misdiagnose what’s happening. One show I would very much like to see live is WoW – World of Wearable Art.

Our son in law is involved in WoW and our daughter invited my wife and myself down to Wellington to see the show. It’s something I’ve always wanted to see ever since it started back in the 1980s. However, after discussing the matter with family, we all came to the conclusion that it was not a show would have a good outcome for me.

So this evening while my wife, daughter and grandchildren spent an evening spellbound by the spectacular sets, costumes and choreography, I spent a very quiet evening in my daughter’s home babysitting a cat and dog. Such is life.

(Excerpts from the 2015 show)


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A week of it

It’s been one of those weeks where it has made itself very present in my life. In fact it has been intruding somewhat more frequently than normal over the last month or so.

At the beginning of the week (or was it the weekend? Timelines are rather vague things when it is around), I went out for a short evening stroll of ten to fifteen minutes only to return home five hours later, shortly after midnight.  Obviously it had plans I’m not aware of. I have no idea where it lead me, but judging by the wear on my sandals and the pain in my leg muscles the next day, I walked nonstop for the entire time.

Then mid-week, I took the car to our garage for its six-monthly WoF (Warrant of Fitness). As I was handing over the keys, I felt that odd out of body sensation that I sometimes get before it makes an appearance. Fortunately there’s a supermarket next door to the garage, so I decided to head there and buy an isotonic drink in case it was being triggered by dehydration.

I remember walking through the supermarket carpark (parking lot), but have no recollection of entering the store. As best I can work out, a friend saw me staggering about in the town square over an hour later.

Apparently others had seen me but assumed I was intoxicated and did nothing to assist me. However she knew enough about it to get me safely home.

By Friday my wife was concerned that it had been around almost continuously for a week and showing no signs of leaving. She managed to get an appointment at short notice at the medical centre. Apparently the doctor took one look at me and promptly ordered an ambulance.

I have no recollection of visiting the medical centre or of the trip to hospital. I do have a vague recollection of having a fascination with a stream of lights, which were probably passing ceiling lights as I was wheeled down corridors.

The first clear recollection I have is being told that I would be going for a CT scan shortly. I had the scan at about 2:00 am on Saturday morning.

It seemed to have abandoned me by midday Saturday, and I was informed that I would be discharged later in the day provided I could show I could walk steadily. Finally I was given my discharge form mid afternoon, and an hour later I was home.

Has it left me for the time being? It doesn’t seem so. It had taken up residence again by the time I woke up this morning (Sunday). It is just being a minor nuisance at the moment – a mild pulsating headache and a misjudgment of clearances between objects on my right and and various parts of my anatomy (and I have the bruises to prove it). I am hoping it will soon get bored and leave me alone for a while. Time will tell.

I notice that it has been given a new name. On previous discharge forms it was either not given a first name, or was given a first name of “atypical”. This time it had been given a new first name of “hemiplegic”. It‘s last name hasn’t changed. That’s still “migraine”.

Hello hemiplegic migraine. I can’t say I’m pleased to know you.


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Migraines suck

Tonight the wife and I are supposed to be enjoying the Royal Edinburgh Military Tattoo in Wellington. We bought tickets for the event many months ago and paid an arm and a leg for the perfect seats. We were both keenly looking forward to seeing the spectacle tonight.

Instead I am lying in a darkened room in somewhat of a fogged frame of mind. The mental fog is a direct result of the migraine, and while it dulls my cognitive skills, it also dulls my perception of pain. Something I am grateful for.

We drove from Feilding to Waikanae yesterday to stay with our daughter and family. Waikanae is only an hour from Wellington on the suburban train system and as the stadium where the tattoo is being held is only a few minutes walk from the Wellington railway station, it made more sense to take the train instead of trying to find parking space within walking distance.

Shortly after midday I felt that out of body sensation that often precedes a migraine and by mid afternoon I realised that a migraine was on its way as my vision began to loose its precision.

I took some pain killers and with a sinking feeling retreated to a darkened and quiet spot in the hope that it would all blow over before it was time to leave.

Unfortunately by early evening I could no longer walk without staggering and my ability to comprehend language was on the way out and I realised that I’d  be courting disaster by going out.

So our daughter is accompanying my wife to a fantastic night’s entertainment while I struggle to keep from drifting into unreality.

I recently discovered that at times like this, conversing at the slow pace required by typing with one finger (all I can manage at the moment) I can remain somewhat in the real world one letter at a time. Even though the light from the phone screen is very unpleasant, even at its minimum setting, and I hit the wrong letters more often than the correct ones  (thank goodness for predictive typing), by communicating at a pace I can manage, I am finding that I cease to be enveloped in that fog of nothingness that has so often accompanied the migraines.

Of course there’s the possibility that I’ll ramble somewhat incoherently, but if as I am beginning to suspect, it shortens the duration of the migraine, and/or reduces its severity, then that’s something readers will have to put up with.