Category Archives: Creative Works

Creative works

The Knotted Thread

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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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the skin between you and me

my calm skin,
appears to be;
probably ok.
but i hurt.

i wonder what act
shows the pain?
nothing true, so:
my false smile.

you cannot see
beneath skin.
here i am,
invisible me.

my polite smile,
tells you we;
communicate well.
you misunderstand.

i struggle inside,
why not speak?
i save us,
at my expense.

our natures differ;
pretend or be judged.
here i am,
invisible me.

my abilities,
demonstrate a;
basic competence.
i dream of more,

yet i function.
so what else?
too tired –
i cannot say.

let me hide,
this world hurts.
here i am,
invisible me.

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