Another Spectrum

Personal ramblings and rants of a somewhat twisted mind


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The case for autistic pride — Yenn Purkis Autism Page

For a great many of us on the spectrum, Autism Awareness day/month in April is less than helpful especially in the form promoted by Autism Speaks – a “support” organisation that definitely does not speak for Autistic people. Instead, Autistic Pride Day (June 18) is the day to show the world we are not inferior but just equal and different. I might have something more to say on the day that is more relevant to my personal experience, but here is a post by Yenn Purkis that I believe most neurodivergent people (not just autistics) can relate to.

Friday June 18 is Autistic Pride Day so I thought I would write a blog post all about autistic pride. Sometimes people say ‘why would you be proud? You can’t help being autistic. It just is.’ I think for members of marginalised groups, like Autistics, pride is a political act and a way of asserting […]

The case for autistic pride — Yenn Purkis Autism Page


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Photovoltaic generation and more

PV generation

Since the 7th of May, our household has been generating some of its own electricity. Given that it’s only another three weeks until the shortest day of the year arrives, we’re achieving better savings than I expected. We have an all electric home (no gas, oil, coal, or wood), so we do consume quite a lot of electricity – 818.8 kW/h in 25 days of May to be precise. We generated 40% of that ourselves from 23 PV panels mounted on the roof.

In the highly deregulated electricity market of Aotearoa New Zealand, there is a considerable difference between the price supply companies sell electricity to consumers and the price they will buy back surplus home generation. Their sell price is typically around four times their buy price. The price differential made it tempting to install storage batteries so that we could call on surplus power when generation was low. But after discussing that option with several installers, we concluded the the return on investment was longer that the estimated life of the current generation of batteries.

Instead, we have installed an “intelligent” inverter that diverts any surplus electricity into the hot water storage system. Instead of maintaining a constant 55°C (131°F) the water is allowed to fluctuate between 40°C (104°F) and 78°C (172°F). Only after the water has reached its maximum temperature does the inverter allow electricity to be exported to the grid. Don’t worry, a regulator ensures that the maximum temperature at the tap (faucet) is no more than 55°C. In effect we’re using the hot water system as a sort of battery. We haven’t needed to use grid electricity to heat the water since the solar power was switched on. Even so that has been a few days where we have exported small quantities of electricity. I expect that in summer we’ll be exporting considerable amounts during the day, and as the heat pump will be switched off, our nighttime use should be minimal.

Covid alternatives to travel

For the most part we Kiwis have been largely unaffected by Covid-19 with the exception of international travel. In our case, it meant the cancellation of an extended holiday in Japan. We’ve concluded that at our age, it’s unlikely that we will feel the urge to undertake the journey once the dangers of the pandemic have passed. Instead we put the funds intended for travel towards solar power. Of course it’s not just a case of having the panels installed. The house, and especially the roof was in need of a repaint, so it made sense to paint the house before the solar panels were installed.

But if we’re going to paint the house, there’s a matter of some repairs that have been on the backburner for a while. The front door for example. Aging had caused fine cracks to develop in some of the wooden panels allowing daylight to be seen through them, not to mention a draft in windy weather. And if the door is to be replaced, why not replace the horrible single-glazed yellow sidelight with something that allows more light into the entrance lobby while reducing heat loss?

To cut a short story shorter, we had a new thermally isolated door and sidelight assembly custom made. The door has a digital lock so that’s one less key I have to worry about. The installers took only two hours to remove the old door and sidelight and install the new assembly. The transformation is quite amazing! Some of the recent changes can be seen in the images below.

The front door – before and after

The front (2 images) and rear (1 image) of the house before the repaint. The rear view clearly shows to state of the roof.

The final result with PV panels installed – 10 on the east facing front, and 13 on the rear facing west. The original paint scheme consisted of eight colours, the new has just four.


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Activity – not exercise

I’ve never been one to exercise, and instead prefer regular moderate activity throughout the day. It seems that I might be on the right track. A recent study has shown that strenuous joggers had the same mortality rate as sedentary people who did nothing. And of course these people suffer a higher rate of exercise related injuries.

I appreciate some people get a buzz from strenuous activity, and that’s fine, but if the only reason for doing it is to promote a long and healthy life, there are other alternatives that may be even more beneficial: It turns out exercise isn’t that good for you after all.


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Autism: How to be normal (and why not to be)

This being autism awareness month, you’ll probably see me posting more articles about autism than normal. I make no apologies for doing so.

The following heartfelt Youtube video is from a TEDx presentation by a fellow autistic, Jolene Stockman. Her experiences very much parallel my own, apart from learning to drive (I found it easy and enjoyable) and the age at which being autistic was discovered (60 in my case).


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We deserve better

In the unlikely event that you are unaware, April is Autism Awareness Month. You may see slogans such as “light it up blue” and others promoted by an organisation inappropriately named Autism Speaks. What it doesn’t do is speak for the autistic community, and in the eyes of most adult autistics it does more harm than good.

Below is a video clip created for Autism speaks in (I believe) 2016. While their rhetoric has been toned down in recent years, I see no evidence that their attitude towards autism has shifted one iota. It depicts people such as myself causing irrevocable damage to families and that we as autistics have very few prospects of living a rewarding life unless we are “treated” or unless a “cure” is found.

I’m not bothering with a transcription for this clip as the voices are American and consequently Youtube’s subtitling of the clip is quite accurate. So for those who wish to read read along, please turn on Subtitles/Closed captions.

The “I am autism” video by Austism Speaks that most adult autistics find offensive.

Here are some appalling statistics related to people who are autistic. These are statistics from Australia, but in all “developed” nations you’ll find the situation is similar. It’s important to understand these are not inherent in autism itself, but are entirely due to the way society treats those with autism. If you think racism is harmful, what do these statistics tell you about ableism?

  • About 60% of adult autistics are underemployed or unemployed
  • 87% of autistics have a mental illness
  • autistic people are nine times more likely to die by suicide than the general population
  • autistics have a life expencey of 54 years

We deserve better.

We don’t need to be cured. There’s nothing wrong with us. As suggested in the next video clip, perhaps neurodiversity is important in maintaining a healthy and sustainable cognitive environment in the same way as biodiversity is important in maintaining a healthy and sustainable physical environment. What is very clear to autistics is that current social attitudes towards autism is harmful. It’s not us as individuals that need curing. What is needed is a paradigm shift in how society views neurodiversity

A transcription has been prepared by Theresa Ranft and reviewed by David DeRuwe, so for those who find the Australian accent difficult or for those with hearing difficulties, please turn on Subtitles/Closed captions.

About the speaker Jac den Houting:

Being diagnosed with autism is often seen as a tragedy. But for Jac den Houting, it was the best thing that’s ever happened to them. As an autistic person, concepts like the Neurodiversity paradigm, the Social Model of Disability, and the Double Empathy Problem were life-changing for Jac. In this talk, Jac combines these ideas with their own personal story to explain why we need to rethink the way that we understand autism. Jac den Houting is a research psychologist and Autistic activist in pursuit of social justice. Jac currently holds the role of Postdoctoral Research Associate at Macquarie University in Sydney, working alongside Professor Liz Pellicano. In 2015, Jac was awarded an Autism CRC scholarship to complete their PhD through the Autism Centre of Excellence at Griffith University in Brisbane. Prior to this, they gained almost 10 years’ experience as a psychologist in the criminal justice system, with the Queensland Police Service and Queensland Corrective Services. Jac was identified as Autistic at the age of 25, and is proudly neurodivergent and queer. After participating in the inaugural Future Leaders Program at the 2013 Asia Pacific Autism Conference, Jac quickly became established as a strong advocate for the Autistic community. Jac is a current member of the Autistic Self Advocacy Network of Australia and New Zealand (ASAN-AuNZ)’s Executive Committee, the Autism CRC’s Data Access Committee, Aspect’s LGBTQIA+ Autism Advisory Committee, and the Aspect Advisory Council.

source: https://www.youtube.com/watch?v=A1AUdaH-EPM
Why everything you know about autism is wrong – a TEDx talk by Jac den Houting


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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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Changing perspectives

It still comes as a surprise to me to realise my perspective on many aspects of life have changed over the years. I’m also reminded that much of what I comprehend about the society in which I live is viewed differently by others. Some nuances are so subtle that it is only now in hindsight and because they are topics of debate today that I realise I did not understand let alone appreciate some social norms I grew up with.

One of these is gender roles. I completely failed to recognise that society had different expectations of men and women. It even baffled me why certain types of attire were considered appropriate for one gender but not the other. But it was the more subtle expectations for both men and women that I failed to pick up on and was oblivious of their existence.

I grew up in an era where most families could live in moderate comfort on a single income and virtually every household had a stay at home parent while there were children in their care. It never occurred to me that the reason most households had a stay at home mother and not a stay at home father was primarily due to social expectations and not a matter of choice negotiated between the parents.

Prior to my teen years, I adopted whatever behaviour and role I felt suited me, and being unaware of social expectations, I simply took on aspects that today would be viewed as gender nonconforming or nonbinary. Starting in my early teens I had most of this adaptation knocked out of me as I became aware of the negative views many held about me, and especially by acts of violence that I thought I had provoked merely by being different from the norm. I wasn’t fully cognisant of the disapproval being gender biased. Instead I had an understanding that it was not acceptable for me, as an individual, to exhibit such behaviour without understanding why.

It wasn’t until my mid twenties when it dawned on me that there were oh so subtle ways that societies place different expectations on men an women. The first occurred on my honeymoon when my new mate prostrated herself in front of me promising to be a good and obedient wife. To say that I was surprised is an understatement. I was shocked and appalled. I made it very clear that I was expecting an equal partner, not a servant. I later learnt that she was just as shocked at my response, but pleasantly so. Admittedly her culture had (and still has) more clearly defined gender roles, but it’s only a matter of degree, not that it was absent in my own culture.

The second occurred after I grew a beard in the mid 1970s when they were far less common than now, but more often worn by men of privilege. I didn’t grow it as a sign of masculinity or as a fashion statement, but because I loathed shaving and having very wavy hair, ingrown hairs were an all too often painful fact of life. Overnight the way both men and women responded to me changed – especially those who did not know me personally. It was quite an eye opener.

Both genders tended to be more polite to me but in different ways. Men tended to treat me as an equal or as someone slightly more “knowledgeable” than themselves. I was also assumed to be older than I was. Women on the other hand tended to display a sightly more subservient role in my presence as if somehow the beard gave me more authority. I felt even more uncomfortable in the company of others than ever before – both men and women.

The reason I was prompted to write this post was that I heard a song this morning that was a favourite of mine in the late 1960s. It has always brought a lump to my throat and a little water to the eye. It reminded me so much of the relationship between my parents who had so much respect and love for each other, although rarely expressed in the presence of others. I’ve always viewed the words as an expression of love by an equal partner, but when I now hear the answer to “what should I want from life?” in the last verse, the answer makes me somewhat uneasy. There’s an implication that one’s worth as a woman is measured by having a loving spouse. Or am I reading too much into the lyrics?

Allison Durbin – I have loved me a man (1968)
I have loved me a man, like my momma did
I have loved me a man.
Tall and tender, his hands like my daddy's were
With a mind that understands

And the arms that held me when I would cry
The lips that kissed away my tears
They're a part of the man that my momma loved
And I have loved me a man

I have wed me a man, like my momma did
I have wed me a man
I can still feel the warmth of the words he said
He held my heart tied in his hands

And in the morning I would wake by his side
And wonder what I could have done
To be loved by a man like my momma loved
And I have loved me a man

I would bear him a child, like my momma did
I would bear him a child
She'd be gentle and sweet, like my momma was
I'd watch her grow and in a while

She'd ask me momma what should I want from life
And I would tell her with a smile
Just be loved by a man like your momma loved
And I have loved me a man

And I have loved me a man


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Manaakitanga – a Kiwi answer to Covid

One aspect of Pākehā (European) cultural dominance that we Kiwis have historically downplayed is the undervaluing and sometimes the suppression of Māori culture. Sometimes it has been the result of a misplaced belief that one culture is more advanced or otherwise better than another. Other times it resulted directly from a notion of entitlement – that settlers had a right to indigenous resources and if that necessitated the overriding of Māori customary law by British law, so be it.

A hundred and fifty years later, the courts are beginning to recognise that customary law has equal footing with common law, and not before time. In legislation we are seeing a start to the recognition of the Māori world view as a legitimate perspective on equal footing with the Western world view. One example of a change from the Western perspective has been the granting of personhood to forests, to rivers and their catchments, and to mountains. I wouldn’t be surprised if in the next few decades much more of the landscape is also granted personhood.

I accept that such a concept is alien to most people immersed in Western monoculture where personhood can only be granted to individual humans, and to a limited extent, to corporate entities. In the West, two thousand years of Christian thought has separated humanity from nature and has placed mankind, collectively and individually, above and in control of nature. It hasn’t worked out too well in my view.

Since the revival of Māori culture, from the 1970s onwards, aspects of Māori culture have started to infiltrate our once Western culture. At first, it was merely the acceptance that aspects of Māori culture were “allowed”. In other words, Pākehā “granted” Māori the “right” to express their culture publicly – a form of tokenism. But over the decades something more profound has occurred.

Not only have Pākehā accepted, and more recently welcomed aspects of Māori culture, they are also embracing it. By this I mean that not only have Pākeha recognised that Māori culture has equal standing with their own, their world view is being coloured by it. Perhaps Pākehā have been influenced more by Māori for more than a hundred and fifty years, but it’s only very recently that they have acknowledged the fact.

I return now to the topic of this post: manaakitanga. If you look up the term in the Māori Dictionary, you’ll see that it is defined as “hospitality, kindness, generosity, support – the process of showing respect, generosity and care for others“. But it’s more than that. It’s also about recognising the collective – that one’s freedom as an individual is only as strong as one’s place in the community.

The importance of the “collective” has probably been an unconscious part of the Kiwi culture for more than a hundred years. Perhaps some on the right of the political spectrum will identify this with socialism, but I believe that is only partially correct. Socialism is “a political and economic theory of social organization which advocates that the means of production, distribution, and exchange should be owned or regulated by the community as a whole“. Manaakitanga is more about values than about process.

Concepts such as universal suffrage and welfarism that became part of the New Zealand landscape in the latter part of the nineteenth century, and more recently, a universal no fault accident compensation and recovery system, can I believe, be at least partially attributed to manaakitanga, although Pākehā have been slow to recognise the source. Today manaakitanga is a core part of the education system in Aotearoa New Zealand.

So what has manaakitanga to do with the current pandemic? It is, I believe, the reason why this nation has been successful in keeping Covid-19 out of our communities. While being an island nation has made the shutting of borders somewhat easier than most nations, given the will, any nation could do the same. And the argument that a nation can’t shut its border due to commerce doesn’t cut it either. This nation is more dependent on international trade and the steady inflow and outflow of travellers than most. For example, as a percentage of GDP, international trade in NZ is twice that of the US.

Manaakitanga can be seen in our willingness to forgo personal freedoms for the sake of the community as a whole. When this nation went into lockdown for six weeks from late March last year, they were the most restrictive anywhere, (with the possible exception of Wuhan.) If you believe Kiwis accepted the hardships and pain the lockdown caused because we’re “subservient to our overlords” (yes, I’ve seen that description used of Fox), then you really don’t know Kiwis at all.

We made our sacrifices in the interests of the the collective – what we have called a “team of 5 million“. And it worked. Our lives are for the most part like they were before Covid appeared on the scene. The experience has reinforced the idea that an individualistic approach is not enough and that it takes a team for us all to gain true freedom.

Perhaps the relative failure of many nations in the West compared to those in the East, is due to the notion that personal individual freedom, and “rights” are paramount and above the interests of the collective. I’m not sure that such a concept has ever been held in the high regard in this nation. It’s not part of the Māori world view, and when we consider the motives of many of the early settlers, it wasn’t high on their agenda either. A “fair go”, an escape from the excesses of unregulated capitalism, egalitarianism, equity and equality in equal measure, and fair sharing, were more on their minds than personal liberty and bettering their peers.

The influence of a Māori world view has, I think, lead us to better understand what it is that we have always, if unconsciously sought, and now Pākehā too have a name for it: manaakitanga.


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A Twitter violation revisited

Well, it seems there is at least one human at Twitter, or a good imitation of one. I have received a qualified apology. And my reason for “qualified” is as it seems to imply that my account exhibited automated behaviour. I’m still struggling to understand how expanding a very long conversation thread as I was reading it exhibited such behaviour. Perhaps I was reading too fast? But I’ll let it rest for now.

Hello,

We’re writing to let you know that your account is now unlocked. We’re sorry for the inconvenience.

A little background: We have systems that find and remove automated spam Twitter accounts, and it looks like yours was flagged as spam by mistake. This can happen if an account exhibits automated behavior in violation of our rules.

We apologize for the mixup, and hope to see back on Twitter soon. 

If you need to get in touch with us again, please file a report through your Twitter app or our forms page, as this account isn’t monitored for replies. 

Thanks,

Twitter