Author Archives: warren

Experiences of humans diagnosed in the autism spectrum as adults

“There is nothing new under the sun” is a funny phrase. Everything was new at least once, so it cannot be a true statement. But I understand the intent and human experience does form relatable pathways, particularly when there are shared elements, like being in the autism spectrum. A research article was bought to my attention recently – ‘The Not Guilty Verdict’: Psychological reactions to a diagnosis of Asperger syndrome in adulthood1.

The paper discusses shared experiences in the transition from ‘being an outsider’ to finding identity for adults diagnosed in the autism spectrum. It describes the process as a problematic search for an explanation which reaches a turning point when understanding is gained, resulting in a mixture of emotions (usually requiring professional and personal support). “Indeed one of the strong messages from this research is that diagnosis, for the individual with Asperger syndrome at least, should be considered not as a single event but as a process that may span months, if not years.”1 There are parallels in this process with the search for meaning most people undertake during their life, however the details do show the differences and difficulties introduced by being autistic.

Before examining the research in further detail, there is another important observation in the article to highlight. It demonstrates the value of diagnosis, even for adults, as undiagnosed adults can be impacted by “a variety of mental health problems such as anxiety, depression and self-harm”.1 Also, in contrast with the adult experiences, the research does indicate an improvement for the lives of children with an “early diagnosis is associated with positive psychological outcomes for these individuals. The feelings of ‘difference’ from others, or indeed ‘inferiority’, is likely only to grow and be reinforced over time.”1

There are six common discussion areas detailed in the research paper – it is well worth reading from the results section onward. Quotes from research participants are included along with accessible commentary. Other people’s experiences has been constantly interesting to me, and reading about others was one of the recommended first steps for myself in the days subsequent to my own diagnosis. It was recommended to me as another way of testing the validity of diagnosis – probably as I am beyond trusting anyone, particularly in their judgements of me. So, here are the six areas from the research article with passages from my story2 to add further elaboration.

“Negative life experiences: The impact of negative life experiences on individuals before they were diagnosed with Asperger syndrome.”

Not Guilty Verdict Extracts1 Warren’s Story2

Participants frequently experienced negative life events prior to receiving a diagnosis of Asperger syndrome, often starting in their childhood and teenage years. One of the main experiences participants highlighted was of not feeling accepted and feeling they did not fit in with their peer group.

Participants reported a number of coping mechanisms they utilized to deal with their experiences. Often, these involved becoming more withdrawn and avoidant of social contact with their peers.

As a forty-four year old adult I do not recall any time in my life when I have thought well of myself. I have always known there is something different about me.

I am usually extremely quiet and reserved. It is a coping strategy. The less I say, the fewer chances there are for other people to notice the differences in me. There’s not much to identify me as autistic to the casual or maybe even prolonged inspection, especially when I am being unnaturally normal.

“Experiences of services (pre-diagnosis): The individual’s experiences of health services (good and bad) prior to receiving a diagnosis of Asperger syndrome.”

Not Guilty Verdict Extracts1 Warren’s Story2

All participants described having experienced mental health services of some kind prior to gaining a diagnosis […] failed interventions and reinforced feelings of not fitting in and being different.

“I knew there was something wrong with me from an early age”

“I had read loads of books and stuff . . . to try and find out why I was the way I was but . . . I never really found a satisfactory answer.”

“I am always dead paranoid that someone is going to say, ‘Oh we have made a mistake and you haven’t got Asperger syndrome . . . you are just depressed and psychotic [laughs]. So you can’t have access to any of the services. Go away.'”

Being “not me” was the communication style I had developed. I did not know how to behave in the presence of the people I wanted to help me – I ended up feeling disingenuous and hidden despite wanting to be open and as honest as possible.

Though I knew I needed help, I had not been able to ask for it in the right way. So, after many attempts, in 2011 I gave up looking with the conclusion that it was pointless. I concluded I was broken in a way not to be helped by medical professionals.

“Beliefs about symptoms of Asperger syndrome: The framework in which an individual’s difficulties were explained prior to receiving a diagnosis of Asperger syndrome.”

Not Guilty Verdict Extracts1 Warren’s Story2

Following on from their experiences of not ‘fitting in’ with their peer group, eight out of the 10 participants stated that this continued throughout their lives and that they came to believe they were ‘different to other people’. This feeling of ‘difference’ was often not specific and was highlighted either through their own personal awareness or other people’s insight into their differences.

Although many individuals stated that they held this belief, they were often unable to offer any specific explanation as to how they were different.

[D]espite their efforts to mask their difficulties, most soon realized that this was unsuccessful and could potentially make symptoms worse due to increases in stress levels.

“I knew I had something going wrong but I didn’t know what. I had known even when I was still at school that I had something wrong with me.”

“I didn’t know what was wrong with me all of my life, why I felt different.”

“I think that people only need to know me for a short time to realize that there is something wrong.”

Unlike the various hypotheses that attempted to explain me over the years – isolated child, force of nature, fatigue of work, typical man, and introvert – the autism spectrum has a comprehensive explanation.

How can I tell aspects are missing when I haven’t experienced them? There is never a clear sign. I can attempt to measure the evidence of my difference in the reactions of people around me, but I first have to be suspicious of a difference to start measuring. My suspicions can be raised in my dealings with other people – for example, why am I regularly confused when everyone else around me understands?

Something about me is unexpected. Many times I’ve heard people say my reaction was different from how they thought I would behave. Others tell me I confuse them, or they cannot read me at all. This is another source of evidence highlighting my difference – the feedback from others.

“Identity formation: Experiences of integrating Asperger syndrome and its symptoms into an individual’s sense of identity.”

Not Guilty Verdict Extracts1 Warren’s Story2

All of the participants in this study had gone through their childhood and teenage years without having any understanding of their difficulties…In the absence of having any other framework within which to explain their difficulties, many individuals appeared to believe what other people were saying and internalized these ideas…[and then] felt that their lack of understanding of their difficulties had contributed to their mental health difficulties.

By the time 2013 is reached I came to believe that not only am I a ‘failure of a person’, but I have a toxic effect on the people close to me. A great deal happened in between the younger and older me, but I understood early on there was something wrong with me.

I was not able to express those feelings to anyone. There are things I knew to be core truths, but they were difficult to translate into words. For me, I knew I was different. It seemed something was wrong with me, but there was nothing I could name. I could see in people’s reactions and how they treated me there were things I should have understood. How could I talk about it or even explain it when I didn’t understand? I didn’t understand what was happening, or that it was exceptional.

“Effects of diagnosis on beliefs: Changes in an individual’s beliefs and views of themselves, following a diagnosis of Asperger syndrome.”

Not Guilty Verdict Extracts1 Warren’s Story2

[Diagnosis may be helpful in these ways:]

  • provide a framework for them to explain their difficulties both within themselves and to wider society
  • offered an explanation for their previous experiences
  • exonerated them from being blamed for their previous difficulties
  • allowed individuals to access services and support that they had previously not received
  • meeting other people with Asperger syndrome, making friends and feeling as though they ‘fitted in’ with a group of people

However, despite this positive reframing of some symptoms, all individuals were still aware of their difficulties.

“Slightly depressed . . . not because I had Asperger syndrome but because I felt . . . like somebody released from prison after 20 years, or in my case 40 years and being told, ‘We are sorry we put you in there, we got the wrong [person]’ and then realizing that I won’t get another 40 years of life to make up for it.”

I did not imagine the diagnosis would improve my current situation, nor would it change anything about how my life had been.

For a while I thought there would be a reversal of this verdict. Perhaps a mistake was made, or maybe it was a joke, another prank on me. Neither of these retractions, or any others, transpired.

And there were other people in the world like me.

What an absolutely fantastical idea. More people like me with similar life experiences. Not so alone anymore. There were books about us. So many books, and articles, and blogs, and videos, and forums.

“Effect of societal views of Asperger syndrome. The impact of others’ beliefs about Asperger syndrome on the individual.”

Not Guilty Verdict Extracts1 Warren’s Story2

[Typical reactions:]

  • been aware of their differences for a long period and therefore were not surprised when they heard of the diagnosis
  • families felt relieved about the diagnosis as it absolved them of any blame for their relative’s difficulties

[R]egardless of the nature of the reaction by friends and family, all participants had realized that there was a lack of understanding of what Asperger syndrome was and how it affected the individual.

Family members who had been alienated by me now made sense of their experiences with me. For children there are interventions that will make a difference during their life. Many people question the value of an autism spectrum diagnosis for adults. Contrary to the doubt in those questions, the value of understanding extends well beyond me. It positively affected many people around me. Diagnosis was just the beginning of understanding though.

Though I have mentioned the reason for adult autism spectrum diagnosis previously, this has been a good opportunity to delve further and elaborate on the subject. Here are a few statements from the paper about adult diagnosis:

[It is important to recieve] a diagnosis in order to provide an explanation of behaviour, discuss previous negative experiences (including bullying and ‘not fitting in’) and gain access to support. […] Of particular note is the significant feeling of alienation and ‘difference’ from others experienced by the participants in this study … often without an apparent explanation. […] [E]arly identification and support for individuals with Asperger syndrome must be the ongoing goal of services yet, in cases of late diagnosis, there is a clear need for post-diagnostic support, informed by an understanding that a lifetime of negative self-appraisals is unlikely to be undone in a single assessment appointment.1
  1. Punshon C, Skirrow P, Murphy G (2009) The ‘not guilty’ verdict. Psychological reactions to a diagnosis of Asperger syndrome in adulthood. Autism 13(3): 265–83
  2. Mayocchi, W. (2015). Human: Finding myself in the autism spectrum. Brisbane: Crusma Pty. Ltd.
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Climate Contrasts

Scepticism is a valued human trait and we have celebrated it in our folklore in various ways. The Boy Who Cried Wolf warns us not to raise unneeded alarm. Chicken Little warns of the consequences in overreacting. Nobody wants to be taken for a fool. Even in Australia we have the literary character Hanrahan, an alarmist who is fond of saying, “We’ll all be rooned before the year is out.” Hanrahan’s words can be used to mock those who raise problems (if it is unclear “rooned” means “ruined”).

As you probably do, I like to think I question everything with appropriate rigour, and I also like to think I respond to facts with the willingness to admit faulty thought and correct myself. However, healthy scepticism is an appropriate defensive strategy in our world where there are plenty of people like the wolf boy, Hanrahan, or Chicken Little. But scepticism puts us at risk of disregarding alarming news when it is outside the bounds of usual events and the limits of personal belief. At this point another mythological figure becomes relevant – Cassandra. She was gifted and cursed. Gifted with the power to speak true prophecy, but cursed to always be rejected with disbelief in everything she foretold.

Events of the last couple of weeks demonstrates a triumph of scepticism for some and the failure of Cassandra for others. Representatives from nations met to discuss the progress on climate change management. Enough countries signed the 2015 Paris Agreement over the course of 2016 to bring it into force on 4/11/2016. Even Australia announced it would sign the agreement which means the government formally recognises and commits to the goals of the agreement – broadly to limit climate change to between 1.5 and 2 degrees of warming. This seems to be in opposition to how the government actually operates. However, with cynical analysis, it is possible it was only signed so Australia would be allowed into the discussion rather than be relegated to an observer role. One hopes Australia always intended to be a signatory, however actions of the Australian government speak louder than the relatively weak responsibilities of the Australian signature on the Paris agreement.

If we assume the Australian government signed the agreement in good faith, it means we have a budget of less than 5 years worth of emissions left to give ourselves a 66% chance of keeping climate change below the preferred goal. A level deemed to be severe but not catastrophic. At face value this looks like a crisis, however we do not collectively act accordingly. Decommissioning usage of fossil fuel energy systems seems improbable in short time frames (if ever) – consider petrol cars, coal/gas power stations, and so on. Given the difference between agreement and action we have to wonder whether this is a case of Chicken Little alarm or Cassandra catastrophe?

Recent events add further confusion for the casual observer. USA just voted in a president and political party whose policy is to dismantle the country’s involvement in climate change action and proceed with business as usual. Obviously there are many more factors involved in electing public officials, however the fact remains the American people have voted against acting on climate change. Members of the Australian government celebrated the USA election result. Senator Malcolm Roberts said, “The next point I make about the remarkable outcome in America is that the people of America are at last waking up to the establishment—the elite establishment—that is pushing fraudulent policies like the myth that humans are affecting the global climate.” A view on climate change which is at least perceived to be similar to the beliefs of members of the current Australian government which agreed to sign the Paris agreement, consider a few examples:

  • Ian Macdonald: I have long accepted that the climate changes, but the notion that since the start of the industrial age, our actions are the sole cause are just farcical and fanciful. […] The north is on the cusp of a period of major growth and development, and it’s simply ludicrous to think that by reducing our meagre carbon emissions, which are less than 1.2% of the world’s total carbon emissions, Australia will have any real impact on the world’s changing climate.
  • George Christensen: I know good science fiction when I see it. And that is what I have seen in the climate change debate – a lot of fiction dressed up as science.
  • Julie Bishop: [The Great Barrier Reef is] not under threat from climate change because its biggest threat is nutrient runoffs from agricultural land [and] the second biggest threat is natural disasters, but this has been for 200 years.
  • Cory Bernardi: I don’t and have never bought the alarmist hysteria attached to carbon dioxide as driving climate change. There’s no consensus of scientists, I’m afraid. There’s literally tens of thousands of scientists who have a different view on this. Over the course of time, a lot of the alarmists predictions and forecasts have been proved wrong.
  • Tony Abbot: It sounds like common sense to minimise human impact on the environment and to reduce the human contribution to increased atmospheric-gas concentrations. It doesn’t make much sense, though, to impose certain and substantial costs on the economy now in order to avoid unknown and perhaps even benign changes in the future.

Earlier in the week, just before the USA election and in contrast to the Australian signing of the Paris agreement, Malcolm Roberts released a report on climate change, the key findings of which are:

  • CSIRO has no empirical evidence proving human carbon dioxide affects global climate;
  • CSIRO relies on unscientific Australian and overseas manipulations of data that have fabricated warming temperatures and that the CSIRO has failed to do its due diligence on the data upon which it relies;
  • CSIRO contradicts the multiple lines of empirical evidence that prove carbon dioxide from human activity does not, and cannot, affect climate variability. CSIRO’s approach has serious deficiencies.

He and members of the Australian government obviously disagree with the experts and therefore would appear to be representative of the general Australian viewpoint given they are elected by us. The foreign view of Australia is likely to be of interest as climate change has a global effect. At the start of the week Naomi Klein, author of This Changes Everything, appeared on ABC show Q&A and stated Australia was relatively alone in giving the middle finger to the world with its stance on climate change. Obviously Australia is no longer alone given the USA election result.

The voice of scientists is notably absent from the above discussion. Earlier in the year they wrote an open letter to the Australian prime minister asking for action. They gave Malcolm Turnbull a blunt message – “There is no Planet B. […] governments worldwide are presiding over a large-scale demise of the planetary ecosystems, which threatens to leave large parts of Earth uninhabitable.” Scientists are the source of the facts on which the rest of us rely, throughout history the work of science has been the point of truth allowing us to differentiate Cassandra from Hanrahan and Chicken Little. The CSIRO 2016 State of the Climate report states :

  • Australia’s climate has warmed in both mean surface air temperature and surrounding sea surface temperature by around 1 °C since 1910.
  • The duration, frequency and intensity of extreme heat events have increased across large parts of Australia.
  • There has been an increase in extreme fire weather, and a longer fire season, across large parts of Australia since the 1970s.
  • May–July rainfall has reduced by around 19 per cent since 1970 in the southwest of Australia.
  • There has been a decline of around 11 per cent since the mid-1990s in the April–October growing season rainfall in the continental southeast.
  • Rainfall has increased across parts of northern Australia since the 1970s.
  • Oceans around Australia have warmed and ocean acidity levels have increased.
  • Sea levels have risen around Australia. The rise in mean sea level amplifies the effects of high tides and storm surges.

For the climate scientists who have reported, measured, and warned of the adverse effects humans have on the climate the general disbelief and political opinion must have a strange effect. They are being treated like the boy who cried wolf. Though this disregard is not without precedent – we humans have been fond of rejecting science throughout history. It always seems difficult to accept facts which contradict existing beliefs. From the universal to the mundane we have consistently condemned and rejected science. And it has been to our detriment – for example Galileo was arrested, subjected to inquisition, and condemned for his publications on Earth not being the centre of the universe, Ignaz Semmelweis suffered hardship and ridicule for promoting the scientific observation that washing of hands and medical instruments between patients saves lives. It would seem science could be well represented by the mythical Cassandra as a mascot – doomed to tell the truth, only to receive disbelief. At the start of last week an interesting edition of the ABC radio show Earshot interviewed Australian climate scientists about how they feel about the general reaction to their work. Here are a few statements from the show:

  • Dr Sarah Perkins-Kirkpatrick: Scientists are very conservative, we don’t just muck around with a few maps and here you go, here’s some pretty lines on a plot. We spend hours, thousands upon thousands of hours, making sure we’re doing it the right way. Checking with other people we’re doing it the right way, double checking, rechecking, I don’t know how many times I redo something to make sure it’s absolutely 100% correct before I divulge too much. And also they’re scary, no one wants to know that a 2 degree warming will have an extra 20 or so heatwave days here in Australia. That’s feasible in my lifetime, if not more warming the way we’re going right now. So it’s scary, I want people to know because it’s practically important information, but it’s not a good news story.
  • Dr Sara Arthur: If I talk about it at a dinner party its a bit of a clanger. People were happy until I spoke. It’s a difficult thing to know and it’s not a nice thing to share. […] Forget climate change mitigation, I’ve formulated my family climate change adaption plan. What we will do over the next 10 years, what we will do over the next 20 years. I’ve got several decades of planning of where we will invest, where will live, how we will live, what skills I want to have for me, what skills I want to my daughter to have in readiness for the future. I’m not living in a tin hat in a bunker with my tin of beans, its not that…but its a version of that. Its kind of sad, and I don’t talk to people about it because it brings them down.
  • Professor John ‘Charlie’ Veron: I’m caught in a problem here because what I say is what I believe the science says. So that’s what I do, I say what the science says, but then I know that hope is a really essential ingredient for getting people to think and to do things that will make the world a better place. They have to have hope. If you lose hope then really you’ve lost the plot altogether, so I’m not speaking at these conferences anymore because I can’t match what the science says with any feeling of hope. It is hopeless and that’s bad. So I shouldn’t even be talking to you about this [the Great Barrier Reef] now, because normally I just shut-up, it’s best I do, it’s best I just don’t speak out anymore.

These interviews stick with me – particularly how we will soon be forced adapt. Another news report from last week resonates with the adaption message, it tells me today’s temperature records will be normal in 2030. It is a confronting message to consider; we have moved beyond the ability to restrict adverse climate change. We have no choice but to adapt to what has been done already, and from here we only have reducing chances to limit worse effects.

In an interview with scientists and farmers from October 2016 adapting is mentioned again. Australian farmers are dealing with climate change and attempting to adapt now. They are not being helped by the government cuts to CSIRO climate research early in 2016. These cuts were reversed to some extent in August however it should be expected the interruption to research in progress and loss of expertise will be difficult to reverse.

Bill Scott-Young (farmer): For all these events that are happening, there is government help. The recent floods is a good example. There is money coming forth, both federal money and state money, to help those that have been affected in Tasmania and probably on the mainland too with drought funding. But they are not looking at the core issue which is basically climate change. So here they are doing Band-Aid approaches when something happens, like there’s a catastrophe of some sort, and yes, there’s money, there’s low interest money to help you over, but they are not doing anything to address the fundamental cause of all these issues. Fundamentally everyone knows what the problem is, but no one wants to tackle it. And we are hopeful that the change comes slowly enough for us to adapt.

As we depart what has been it is easy to despair what will be. Collectively we have not listened to how dire is the current situation, so it will become worse through ignorance. In fact it is guaranteed to become worse because there is a lag between pollution and climate change effect. However, authentic action to restrict climate change is an ongoing concern. Energy efficient lightbulbs, closure of a coal power stations, halting land clearing, installation of renewable energy generation, leaving fossil fuels in the ground (and so on) all move us toward a sustainable lifestyle. Every single thing we do makes a difference. Setbacks will no doubt continue, and it unlikely all humans will agree with remediation of climate change until the problems are clear, present, and personally impacting. By that point we will be at a point of no return given the lag effect mentioned before. One would hope existing human issues elsewhere in the world (or even local to Australia) would be enough for a sufficient number of us to act now, before problems obtaining sufficient food and safe shelter will be impossible to ignore.

The effects of climate change are quickly becoming more obvious. It is a systemic change which affects everything in our environment. In 2016 I have witnessed storms, seen the unusual arrival of bats and butterflys, felt the record warmth and the heat waves (for example, February, July, November). In 2016 my home state has watched a significant portion of the Great Barrier Reef die, we have noted the first mammal to become extinct because of climate change. Of course the effects have been present for years now, my most significant experience to date occurred when I spent five months dislocated from my home due to a severe storm. For those who wish to argue the point, it is common to say that no single event can be attributed to climate change, but that is not an excuse for inaction. Given the systemic nature of climate change, I would reply that no event is independent – everything is affected. We are already adapting. Those who accept and act on scientific fact do make personal adjustments and agitate for repair. As a broader group of people come to realise the magnitude of this emergency and leave their scepticism behind, today’s efforts will be appreciated.

I hope it is enough, but I am afraid because hope is not enough.

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Don’t mention the climate

Having just watched Before the Flood it is disheartening to see another warning to ourselves of the damage we are doing to ourselves. The movie is a call to action to correct our damaging climate change course. Let us be clear, Earth will exist regardless of whether we work to retain our lifestyle or perhaps even our existence. Advanced civilisations have crumbled and species have become extinct throughout the history of our planet. The warnings are not new, they have been ignored throughout the past two hundred years.

Consider Thomas Malthus writing about the subservience of the human race to the laws of nature in 1798:

Through the animal and vegetable kingdoms, nature has scattered the seeds of life abroad with the most profuse and liberal hand. She has been comparatively sparing in the room and the nourishment necessary to rear them. The germs of existence contained in this spot of earth, with ample food, and ample room to expand in, would fill millions of worlds in the course of a few thousand years. Necessity, that imperious all-pervading law of nature, restrains them within the prescribed bounds. The race of plants, and the race of animals shrink under this great restrictive law. And the race of man cannot, by any efforts of reason, escape from it.

Or the economist John Maynard Keynes in 1933, delivering a warning to us about how our political and economic processes were not being utilised for the good of humanity:

For the minds of this generation are still so be-clouded by bogus calculations that they distrust conclusions which should be obvious, out of a reliance on a system of financial accounting which casts doubt on whether such an operation will “pay.” We have to remain poor because it does not “pay” to be rich. We have to live in hovels, not because we cannot build palaces, but because we cannot “afford” them. The same rule of self-destructive financial calculation governs every walk of life. We destroy the beauty of the countryside because the unappropriated splendours of nature have no economic value. We are capable of shutting off the sun and the stars because they do not pay a dividend. London is one of the richest cities in the history of civilisation, but it cannot “afford” the highest standards of achievement of which its own living citizens are capable, because they do not “pay.” […] Today we suffer disillusion, not because we are poorer than we were – on the contrary even today we enjoy, in Great Britain at least, a higher standard of life than at any previous period, but because other values seem to have been sacrificed and because they seem to have been sacrificed unnecessarily, inasmuch as our economic system is not, in fact, enabling us to exploit to the utmost the possibilities for economic wealth afforded by the progress of our technique, but falls far short of this, leading us to feel that we might as well have used up the margin in more satisfying ways.

How about Sigmund Freud in 1961:

It is true that nature would not demand any restrictions of instinct from us, she would let us do as we liked; but she has her own particularly effective method of restricting us. She destroys us – coldly, cruelly, relentlessly, as it seems to us, and possibly through the very things that occasioned our satisfaction. It was precisely because of these dangers with which nature threatens us that we came together and created civilization, which is also, among other things, intended to make our communal life possible. For the principal task of civilization, its actual raison d’être, is to defend us against nature.

These people were not writing about the specific troubles we are now experiencing and we will continue to face over the coming years. However, there were many specific warnings. Consider this newspaper article from 1912:

COAL CONSUMPTION AFFECTING CLIMATE The furnaces of the world are now burning about 2,000,000,000 tons of coal a year. When this is burned, uniting with oxygen, it adds about 7,000,000,000 tons of carbon dioxide to the atmosphere yearly. This tends to make the air a more effective blanket for the earth and to raise its temperature. The effect may be considerable in a few centuries.

The newspaper article was likely to be reflective of prior scientific efforts. In 1824 Joseph Fourier talked about the importance of Earth’s atmosphere in keeping the planet warm. In the 1860s John Tyndall showed the importance of carbon dioxide in maintaining Earth’s temperature. In 1896 Svante Arrhenius used calculations to show warming is the result of higher carbon dioxide in the atmosphere. The science continued to improve … humanity knew what it did, and here we are. Perhaps ignorance of the science could be claimed for a certain amount of time, but ignorance is not the cause of our current situation. Consider articles like this from 1953 in the New York Times:

The amount of carbon dioxide in the air will double by the year 2080 and raise the temperature an average of at least 4 per cent.

Or Time Magazine from 1956:

Since the start of the industrial revolution, mankind has been burning fossil fuel (coal, oil, etc.) and adding its carbon to the atmosphere as carbon dioxide. In 50 years or so this process, says Director Roger Revelle of the Scripps Institution of Oceanography, may have a violent effect on the earth’s climate. […] At present the atmosphere contains 2.35 trillion tons of carbon dioxide, existing in equilibrium with living plants and sea water (which tends to dissolve it). Up to 1860, man’s fires added only about 500 million tons per year, and the atmosphere had no trouble in getting rid of this small amount. But each year more furnaces and engines poured CO2 into the atmosphere. In 1900, the amount was 3 billion tons. By 1950, it was 9 billion tons. By 2010, if present trends continue, 47 billion tons of carbon dioxide will enter the air each year.

History shows a strong paper trail of warnings, growing suspicion, then certainty, and then evidence of our impact on the environment. It is obvious our systems of collaboration fail us, and the excuse used to continue our path toward destruction is no-one knows how to do any better – Keynes again from 1933:

The decadent international but individualistic capitalism, in the hands of which we found ourselves after the war, is not a success. It is not intelligent, it is not beautiful, it is not just, it is not virtuous;-and it doesn’t deliver the goods. In short, we dislike it and we are beginning to despise it. But when we wonder what to put in its place, we are extremely perplexed.

Perhaps this will be a turning point, a historical challenge greater than anything humanity has ever overcome. We are more likely to fail than succeed. A global revolution is required, our systems of collaboration need to change, our collective values need to move on from the pursuit of profit and economic “growth”, we have to invent technology to save us because the promises made in the Paris 2015 agreement are unachievable. Yes I am furious. Hopefully you are too, though I do not have faith in anyone else. (Lack of trust is a personal issue, though not without reason.) We need to be different to survive. We have a hard road to travel, we have to seriously consider the meaning of human life and transform everything we do.

Closing words from Abraham Lincoln in 1862 talking about slavery:

Fellow-citizens, we cannot escape history. We of this Congress and this administration, will be remembered in spite of ourselves. No personal significance, or insignificance, can spare one or another of us. The fiery trial through which we pass, will light us down, in honor or dishonor, to the latest generation. We say we are for the Union. The world will not forget that we say this. We know how to save the Union. The world knows we do know how to save it. We – even we here – hold the power, and bear the responsibility. […] We shall nobly save, or meanly lose, the last best hope of earth.
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The Knotted Thread

KnottedThreadBanner

Over the past months I have been working on a book project with my father – Gordon Mayocchi. My great-great Uncle, Edmund Juniper, wrote the story of his early years before he died in 1985. Edmund moved from England to Australia in 1908 with his rather large family. Above there is a photo from ~1918 of him with two of his sisters – Nellie Juniper (dark hair, and also my great Grandmother) and Jessie Juniper. The cover of the book features Jack Snr. and Mary Juniper (my great-great Grandparents). Though the manuscript needed a lot of work to bring it to a publishable state (and we are proofreading for final corrections now), it is a book which made me think. There were two main points of extended thought (though there is a lot more to the book!).

  1. It demonstrated a degree of community and family unity which seems to have diminished as the world pursued economic and political goals centred on individualistic principles.
  2. The contrasts in life between England and Australia, and also between the Juniper family’s life and my lifestyle, were thought provoking in too many ways to detail here.

The book project was significant to me because it was shared with my father. I think it special to have been able to do this with him. It has also inspired me in various ways to begin working on a new writing project of my own. What will come from these writings I am yet to discover, for the moment the flow of ideas and research is enjoyable.

The Knotted Thread: A tale of Australian pioneers in the early 1900s

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Human book launch

WinnieAndWarren

My book was launched on 30 April 2016. The people who attended heard me give a talk on “What does it mean to be human?”. Then the book was formally launched by Dr Winnie Lau, she described described six aspects a person will observe as they read the book:

  1. Knowledge and scientific information on the Autism Spectrum.
  2. Journey of an adult within the Autism Spectrum, pre-, during, and post-diagnosis.
  3. A peek into a human soul.
  4. A life of paradoxes.
  5. An honest reflection on humanity.
  6. A love story.

Winnie’s use of six points referenced an idea from the book: the “Cube of Abilities”. It is used in the book to describe autism, and is reproduced below.

Now, about the cube. A cube is a six sided, square faced object. Having voiced previously my dislike of the “triad of impairments” phrase, I will offer an alternative – the “cube of ability”. The alternative defines six ability categories, which can then be mapped on each face of the cube:

  • Imagination:
    • can be highly creative and original,
    • routine oriented,
    • literal interpretation of communication,
    • difficulties in taking on other perspectives.
  • Relationships:
    • loyal,
    • unique ways of showing emotion not understood by others,
    • desires friendship but has difficulty sustaining them.
  • Communication:
    • truthful and tactless,
    • delayed language,
    • may fail to understand the full message in person-to-person talk,
    • accurate language,
    • little desire in conducting meaningless talk.
  • Physical:
    • hypo or hyper sensitive to sensory input,
    • clumsy,
    • stomach/bowel problems,
    • self-awareness and calming assisted by repetitive movements,
    • epilepsy,
    • increased congenital minor physical anomalies.
  • Talents:
    • deep interests,
    • intense focus,
    • recognising patterns,
    • systemising the world.
  • Unique thinking:
    • detail oriented,
    • uneven intelligence profile,
    • high risk for intellectual disability,
    • higher fluid intelligence,
    • great long term, poor short term memory.

That list is already unwieldy and it is in no way exhaustive! There could be many abilities listed under each category, I have listed a few to illustrate the idea. The Rubik’s Cube was a great puzzle from the eighties so good it is still available in toy shops today. It is a mechanical device dividing each face of a cube into nine coloured squares and allows those small coloured areas to move around. A mixed up Rubik’s Cube will have many colours displayed together on one cube face. The challenge of the puzzle is to return it to full colour faces – I loved the puzzle when I was in the last years of primary school. To better understand autism, imagine the “cube of ability” with the abilities of the same type lined up on six sides. Now, mix them up so it is like an unsolved Rubik’s cube!

A cube is a three dimensional object. So, if it is mixed up a certain way, you could rotate the “cube of ability” a certain way and you would mostly see autistic strengths. Turn it another way and autistic weaknesses are in the majority.

This is how it is for me. In public life it is probably easy for you to look at me and see stronger abilities within a total package including quirks and an introverted style. That is because I am putting in a significant amount of energy to keep certain aspects of the metaphorical cube facing toward you. I am sure this is something to which everyone can relate. Just as you dress up to go out, you ensure the best you is on display in public. What is not the same for me, as for everyone else, is the aftermath of being in public.

Live with me and you will see the impact of the energy expenditure on me and what I need to be able to recover. This is despite my intentions to hide the impact even from the people with whom I live. If you stay with me, you will probably see other weaker abilities revealed as well. Guests have been unintentionally offended by my ways simply by staying in my house for a couple of days. Relaxing from the vigilance required outside the house has often resulted in misunderstandings or unexplained situations.**

** Quote taken from the book Human: Finding myself in the autism spectrum.

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What does it mean to be human?

What does it mean to be human? It is one of those impossible questions people have contemplated for years with no clear answer. It is a question I have considered in my life. Why? People around me appeared to be having a collective human experience from which I was strangely separate. While what you see in me might make you think of me as a well-integrated human, living almost killed me.

Due to my various abilities I am a functional human most of the time – but there are times when the functional façade collapses. I do think everyone adjusts their approach to the circumstances – for example, by acting professionally when attending work. However, for me, adjusting to be functional is difficult to reconcile with the effort it requires, whether that is at work, at home with close family, or just navigating daily life.

There is a great deal of advice which tells you to “be yourself” for success and happiness. It implies people should be liked when they are their authentic selves. I do not think these philosophies apply to me, or anyone else for that matter. In fact, I believe the philosophy is regularly interpreted in an unhealthy way, allowing people to place the onus for improvement on everyone else. The philosophy implies: “My base self is the ideal expression of me, I have no need to improve because I am perfect as I am. The fault is with you if you do not accept me – you need to change.” How is the “be yourself” philosophy workable if it depends on change in other people? Besides I would never accept surrendering the option of improvement to everyone else.

It is simply a fact of life that I have to be unnatural and inauthentic to function in the world and succeed. If I wanted a girlfriend, an education, a job, then putting effort into behaving in a typical manner has been required. I do not think of this as bad, and I have never intended to be deceitful – I just want to be involved with the world around me, but it is a lot of work. Perhaps it is unfair, but staying in my comfort zone would not have allowed me to be independent.**

There are those who do say my approach is dishonest, unethical, deceptive, just wrong. Being functional in this way is called “passing” in the autistic world and it does have negative consequences – I put myself in the position where I am acting so unnaturally that I feel I am not human, my mental health is negatively affected, life has to be carefully structured to cope, the energy required to be functional means I am constantly at risk of burnout, and my family is punished because I am always recovering.

It is hard to imagine what life would be like if I did not push myself to be functional. Perhaps it would be closer to what I call “Deep Dive Mode”?

When I was five years old I remember my parents retrieving me from the shower cubicle because they thought I had fallen asleep. However I was completely engaged with the sensation of the water – enjoying the experience of water droplets massaging my skin and the isolation from outside noise inside the shower. I was not asleep, I was just not responding to them because of my intense engagement with the water. Deep dive mode is a wondrous place to be, but it is not compatible with functioning in our world. It only requires a low energy investment. Probably because it requires low energy, I can devote extreme energy and attention to what I am doing. Especially if I am pursuing an interest. A great deal can be achieved in this mode because I am directing energy into my interest rather than engaging with others or survival.

My sense of exterior events, people and even my own body will be muted or non-existent in deep-dive mode. It is pleasant to be in this mode, however it does require effort for me to remain engaged with the exterior world. In fact eating, relationships, sleeping, responsibilities, and so on, all become extremely annoying. I can become fixated on something, like an activity, a song, a sensation, or a thought. Sometimes it will be enjoyable to repeat a simple act – rocking in a chair – other times I will be immersed in the pursuit of an interest.

Yes, deep dive mode is my sanctuary.**

It is a dilemma – what do you do when “being yourself” is not functional?

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For me, the title of this book – Human – is a reminder and aspiration. I reminds me not feel inhuman because I am different…and being a functional human is not enough, there is more to the human experience than survival. I aspire to “be more”, Human is a challenge for all of us. Rather than aspiring to be functional, how do we make quality of life a higher priority in our own lives and for those around us?

** Quotes taken from the book Human: Finding myself in the autism spectrum.

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Diagnosed, for science!

For the third time I went through an autism diagnosis process today, all in the interests of science. They used an approach called the Autism Diagnostic Observation Schedule (ADOS), so this was the third unique diagnosis method I have experienced. After that, I spent time talking with a psychiatrist, and then did many tests. It is for a research study conducted by the Autism CRC. Walking in I had been going through, and experienced, the usual “meet new people” issues. Complicating the meeting was the fact that they were focused on me. Would I behave appropriately? What is appropriate behaviour when my behaviour is being studied? Could I relax sufficiently for them to properly evaluate me? A problem with this situation is that no interaction with another person feels natural. Everything is a conscious and energy draining decision…

Do I respond? What is the message I should transmit? Can I do that with a gesture, or do I have to translate it into words? Is my response natural, am I relying on a learned script, or am I wrongly influencing the outcome by logical analysis of expectations?

When an attempt is made to study my natural behaviour, how do I know what is natural so that I can display it? Given that as a starting point, let us move onto physics. In physics, the observer effect describes how the act of measurement changes the quantity being measured. Being aware of the observer effect, and being unwilling to bias the research result one way or another puts me in an awkward position. How real are my actions when I am acutely aware of being observed. Each interaction with another person becomes an over-considered response. Then there are other actions which I usually suppress with other people – should I let them free or stay controlled? And there is consideration of both of those thoughts in the context of whether I am succumbing to the observer effect. It is impossible to think through this situation and arrive at a reasonable answer. So it is up to the researchers to be a step ahead of my thoughts, both in conducting experiments and in constructing evaluations for clinical use. I expect experience is essential in being able to pick apart unintentional deceits from natural responses in a research subject or client.

It becomes the reverse of that in which I am experienced. I attempt to free my natural behaviours, and suppress my over-thought responses. At times I amused myself by recognising what the other person was discretely evaluating, and then was even more bemused by recognising that I had become another observer in this infinite knot of interaction and observation. In retrospect, even though my goals were reversed, this messy overwrought process was actually somewhat representative of my typical interactions. Perhaps I paradoxically behaved more naturally because I am, at the least, unpracticed in being natural?

It has been an extremely draining day, and this piece of writing is me beginning to come down from the experience. Recovery may take several days. I know it is irrational to become so anxious and experience discomfort when meeting new people and participating in new activities. Knowing does not stop it from occurring, but I do prefer to be involved. Though I was not told any results, it was verbally confirmed I have a “clear” autism spectrum diagnosis. I will be provided with the results of the tests in time. That is much better than other research to which I have contributed where I felt like a lab rat – I feel like a member of the investigation team by having my data shared with me.

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Sticks and Stones

“Sticks and stones may break my bones, but names will never hurt me.”

That was a lie that I was told as a child. I have literally experienced sticks and stones, as well as name calling. The worst physical violence done to me as a child was probably being knocked unconscious after being hit in the head by a large stick. I certainly could have been permanently hurt by that incident, but was not. On the other hand the verbal bullying did do permanent damage. “Just ignore it” is harmful advice for a bullied child. Consider the research:

Show your nobility, your human strength – halt bully behaviour. Sticks and stones break bones and names will hurt forever.

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