Today a music video, literally inspired by events from my own life, was released. The band is Lyria: Aline Happ (vocals), Rod Wolf (guitar), Thiago Zig (bass), Thiago Mateu (drums). The album is Immersion, the song is track #4, “The Rain”. It is all due to the band members and their musical talents the song is now a music video. To celebrate this occasion here is “The Rain” by Lyria, and below there are a couple of book extracts and photo which I sent Aline Happ years ago to help in creating the song.

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

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One of my favourite memories occurred in this early period of my life. I remember walking out into the rain wearing a raincoat. The details that I recall are all sensory:

• What I could see was limited because of the dense rain pouring around me creating a misty effect.
• What I could hear was limited because of the constant crash of the rain.
• What I could feel was the pressure of the rain on my rain clothes, and it felt wonderful.

I remember the glorious isolation. I was in my own world. Inside my raincoat I was protected from the wet and I was having an awesome sensory experience. This is how I recall it – I evoke sensual aspects from the memory, usually starting with the pressure on the raincoat, and then the memory comes.

Looking through my parent’s photograph collection I found a photo of myself in the raincoat from my memory. It probably makes me about three years old when the event I remember happened. Thinking back on this now, I love how I was free to interact with the experience in a way that doesn’t seem possible as an adult. As an adult you are expected to be socially controlled rather than interested in childlike fascinations. My sensory interaction with the world is therefore more hidden and subtle now, a finger sliding along a textured wall, enjoying the caress of a strong wind, rubbing a thumb against the edge of a table. While my senses can and do cause problems, they are also the source of comfort, fascination and joy.

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This poem is called boy in the rain.

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Alone.
Surrounded by the loud mist,
Of water crashing into earth,
And a coat of comforting weight.
Freedom in isolation,
Here stands the boy in the rain.

He found a photo of the boy in a raincoat,
And remembered,
The fascination of senses.
And wondered,
Why not now? Why so controlled?
When the world becomes too painful,
Surviving means hiding.

More and more he connected,
With the memory,
The between time,
A series of hurts inflicted,
By him. To him.
Hopes and dreams became self-torture.

She walked into the rain,
And loved.
She suffered because of his ignorance,
But believed.
He discovered love, he regained hope,
Together they dreamed,
She saved his life.

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For those looking for another Lyria song to enjoy, have a look at a favourite of mine “Let Me Be Me”.

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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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where do I go
when the world turns on
come and play it says
people are lovely
and the days excite
my rusting shadow fills
the void of my escape
though I long for the light
the rain sings to me
what a vivid symphony

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