Another Spectrum

Personal ramblings and rants of a somewhat twisted mind


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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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I have stopped donating to Wikipedia

For many years I have been donating anonymously to Wikipedia. Last year I slipped up and provided an email address. As a consequence, I received an email from Wikipedia the other day requesting another donation.

I will not be donating to Wikipedia.

While Wikipedia maintains its editorial policy of deleting pages by or about non-speaking autistics, I refuse to support it financially. For a better understanding of the background, I recommend reading FC, RPM, AND HOW WIKIPEDIA BECAME COMPLICIT IN SILENCING NON-SPEAKING AUTISTICS (13 minute read)


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Extinction Rebellion

I have mixed feelings about the Extinction Rebellion movement. Not because I disagree with their cause – I support it one hundred percent, including the urgency expressed – but because I’m concerned that some of their tactics might do more to alienate them from the general public than to bring them on board.

I have no objection if the movement crosses swords with authority – In fact I don’t think there’s any other option, but unless the public has more sympathy with the Extinction Rebellion cause than they do with authority, and the irritation they personally experience from the disruptions the movement is intent on implementing, then I’m afraid that nothing will change.

Politicians, are sensitive to what they perceive as being majority voices and significant minorities, but are unlikely to listen, let alone act, if they sense the public is not behind the movement. This is particularly true where politicians are elected through an FPP (First Past the Post) procedure.

That being said, what are the alternatives? To be honest, I haven’t reached a conclusion. What I do believe is that the longer the public delay in pressuring out leaders to legislate for a carbon neutral society, the more draconian the legislation and the more authoritarian the authorities will need to be when the do act.

Over on her blog, Clare has published a series on Extinction Rebellion, and in her most recent post – Extinction Rebellion III, she quotes from the UK Quaker Advices and Queries. Specifically:

  • Remember your responsibilities as a citizen for the conduct of local, national, and international affairs. Do not shrink from the time and effort your involvement may demand.
  • Respect the laws of the state but let your first loyalty be to God’s purposes. If you feel impelled by strong conviction to break the law, search your conscience deeply.
  • We do not own the world, and its riches are not ours to dispose of at will. Show a loving consideration for all creatures, and seek to maintain the beauty and variety of the world. Work to ensure that our increasing power over nature is used responsibly, with reverence for life.

The three points have inspired me to re-appraise, where I stand on the environment and I realise my contribution towards a carbon neutral regime is little more than tokenism, and I need to take a more affirmative stance.

Advices and Queries of Quakers of Aotearoa –  Te Hāhi Tūhauwiri contains similar advice:

E7: Are you careful that your use of financial resources is in accordance with our values of integrity, peace, equality, simplicity, and concern for other people and for the environment?

I have put most of my effort in relation to the environment into careful use, but I realise this is really not enough by itself. I need to do more.

E8: Do not be content to accept society as it is. Seek to discover the causes of social unrest, injustice, poverty and fear. Bear witness to the humanity of all people. Try to discern the new growing points in society.
Are you alert to practices here and throughout the world that discriminate against people on the basis of who or what they are or because of their beliefs? Do you work for a social, constitutional and economic order which will allow each person to develop fully and cooperation by all?

Young people of today have a genuine fear for their future, not unlike the fear that many of my generation in the 1960s and 1970s had with regards to nuclear proliferation. Except that whereas our fear was of those in power doing something (launching a nuclear war), that of the youth today is fear of those in power not doing something (preventing a climate change catastrophe).

E14: We need to respect, revere and cooperate with other life systems on our planet. The earth’s diverse riches are not ours to exploit. Seek reverence for life and a sense of wonder at God’s continuing presence in all of creation.
Do you work to conserve the earth’s beauty and resources, both now and in the future, for the many people who depend on this planet and the many other species that share it?

The more extreme effects of climate change are unlikely to affect me. I’ll be gone before they kick in. But it is during what’s left of my life that the the seeds to an irreversible climate runaway will be set. Surely I have a responsibility to help set in motion steps that will reverse the harm my generation and earlier generations have caused and are continuing to cause.

E10: Remember your responsibility as citizens of Aotearoa for the government of our country and for its relations with other countries, particularly our neighbours in the South Pacific.
How can we help our nation to promote international peace, justice and care for the earth?

Our country already has in place legislation requiring a move to carbon neutrality, but there is little incentive for government and industry to reach the targets in an orderly and progressive manner. It’s also apparent that the targets are set too far in the future in light of recent evidence of accelerating climate change. This is an area where I can do more in joining with others to raise the awareness of the urgency of acting now. Which brings me to:

E4: Obey the laws of the state, except when they conflict with your inner conviction. Work to amend laws that you consider unjust. If you feel called to civil disobedience, seek the guidance and support of your Meeting. Be prepared to accept the consequences cheerfully.

Is it time for me to get off the fence regarding the Extinction Rebellion movement and join their ranks, or encourage the use of their tactics? What can I do proactively to promote the concerns expressed by the movement?

For me, blogging is about the comfortable limit to social interaction. Talking to strangers joining crowds, being noticed, is way outside my comfort zone. When I joined in the vigil outside the local mosque on the Friday after the Christchurch shootings, it was a silent and solemn affair. Solidarity with the Muslim community was expressed simply by being there. In a crowd of several thousand I spoke with no-one, and made eye contact with no-one. That made it bearable. How can I be an effective voice when it comes to expressing urgency over climate change when I’m so non-social? Perhaps I should simply be mindful of the words of George fox who stated in 1656:

Be patterns, be examples in all countries, places, islands, nations, wherever you come, that your carriage and life may preach among all sorts of people, and to them; then you will come to walk cheerfully over the world, answering that of God in every one.

But is that enough? No doubt this concern (about climate change) is going to haunt me until I have determined what role I can play.


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Why I’m Not a High-Functioning Autistic

Like most autistics, I dislike functioning labels. These are terms neurotypical people use to describe how an autistic person appears to be relative to a typical non-autistic person from a non-autistic perspective.

I have been described as “high functioning” because I had a successful career of 35 years with the same multinational I.T. company and because I have been married for 48 years and have two wonderful children. Yet my attempts at socialising can at best be described as “tries hard, but fails to implement the required rules. Grade: F”.

My social skills are lacking. I can’t do small talk; I avoid eye contact and touching of any sort unless I know someone very well; I can’t read body language and that especially applies to that used in the process of dating and courtship (by either sex); I didn’t understand gender roles; not being aware of non-verbal communication, I didn’t use any, and my voice and body language appeared to be lacking any feelings or emotion. If I had put my faith in finding a partner the “normal” way, I’d still be looking. (Perhaps I’ll tell the story of how my wife and I discovered each other another time.)

When seeking work for the first time, I applied for six jobs and was accepted for all of them. They were all related to my “special interests”, often referred to by “autism experts” as “obsessive interests”. While I still struggle to tie shoe laces, or converse and do up a button at the same time, I had no problem dismantling a mechanism with over 5000 individual moving parts and comprising of more than 8,000 parts in total, and then reassembling it without the need to refer to a manual. This was in spite of a work colleague messing up my neat piles of parts spread over four workbenches just “for laughs”.

I struggle comprehending a three line haiku in English, yet I had no problem solving a Boolean equation comprising of over 4600 symbols, or single handedly writing and maintaining a parts management system comprised of more than 20,000 lines of code that was used in the company I worked for in the late 1980s until the mid 1990s.

(I have used the past tense with regards to the positive traits mentioned above due to the fact that my ability to process large amounts of information has declined with age and the rise in frequency of migraines.)

On the other hand, I have no perception of the passage of time. I understand the concept of time. I’m unable to experience time passing. Without some external aid, I can’t tell you whether 5 minutes or five hours have passed. Something that happened last week or last decade often feels more recent than something that happened yesterday. My determining of “recent” is based on how much detail I can recall, not on when it occurred.

As a consequence, I suck at time management and prioritising tasks. Given the opportunity to concentrate on one task as a time, I can do a superb job, but ask me to juggle two tasks at the same time, and there’s every chance neither will actually be completed.

So while I’m deficient at some skills, I am very proficient at others. I am neither a “high functioning” autistic, nor a “low functioning” autistic I am simply autistic.

What is most appalling about the use of functioning labels is in the determining of one’s competence. Wikipedia’s editorial decision to delete pages by or about those they consider “low functioning autistics” is but just one example.

This post was inspired by one of the same name by Emily Volz over on the Aspergian: Why I’m Not a High-Functioning Autistic