Autism Awareness Month Canada: Living in the Eye

The featured book for October’s Autism Awareness Month in Canada is the remarkable and touching biography, Living in the Eye: Life with Autism, by J. Kevin Vasey. The beginning pages follow:

Introduction

LIVING IN THE EYE: Life with Autism is the updated version of THE ROAD TRIP: Life with Autism (Novalis, 2005).

Each chapter (except the last two) begins with the section, Dialogue from The Trip to the East 1992, the documentation of a 1992 vacation tour of Atlantic Canada by my parents and me. It originated as a collection of conversations transcribed from a Sharpe Memo Writer. The conversations spoke to the awakening of my communication skills, a rejuvenating experience for all of us.

Next is a section, Notes from Eastern Canada Motorhome Tour 2014, comprised from the journal of a more recent holiday taken in our motorhome to Nova Scotia, home of my maternal grandmother.

The third section, Looking Back, describes earlier events in my family’s life.

Lastly is a section, Comments from my brothers, in which my brothers, James, Christopher and Joel share their memories and convictions.

Some of my poetry and other writings are interspersed throughout the book.

I named my recent book, LIVING IN THE EYE: Life with Autism, because I experience my personal life as one lived in the eye of a tornado. Inside the eye of autism, I can never turn my brain off from colours, sounds, and a constant storm of thoughts and emotions difficult to express.

And yet the whirling eye is the safest, calmest part of a tornado. It’s my refuge from the world beyond my private space – a world often visited by chaos, unpredictability and frustrations.

It is my hope that, in the telling of my story, others may find inspiration and courage to dare challenge life in whatever form it is presented to them.

 

1 – Living in the Eye

It was at the beginning of my experience of communicating through typing that I made the first recorded trip to the Atlantic Provinces. That was in 1992, a time of discovery for me and my family. Dialogue from The Trip to the East 1992 is from that earlier trip. Additional comments under Notes from astern Canada Motorhome Tour 2014 are from a recent holiday in many of the same places.

Dialogue from The Trip to the East 1992

It is July 16, 1992, the evening before we leave for Nova Scotia. A counsellor from St. Francis House has dropped me off at home, vacation gear in tow.

For several months, I’ve been preoccupied with two things: the trip to the east, and writing a book about my life.

My parents and I are combining the two and I’m keeping a journal of the adventure, laboriously typed on a Sharpe Memo Writer.

Mom: Kevin, I wasn’t expecting you until tomorrow.

Kevin: As far as I can tell, this is the day I’m to be here.

M: When do you think we’re leaving on our holiday?

K: Tomorrow.

M: You have two very large bags, I see.

K: Yes, we’re going on a long trip and that requires a lot of belongings.

M: Do you know why Dad is chuckling?

K: Because he likes to hear me talk. Dad should pack the car now because we’re leaving tomorrow and he should leave early.

M: But I have to work tomorrow.

K: As soon as you get home, we’ll be waiting.

D: Kevin, we won’t be going to Newfoundland this trip because we’ve been unable to get ferry reservations. We’ll go another time.

K: I’m disappointed, because everybody thinks I’m going to Newfoundland.

M: We still have lots to do with seeing Nova Scotia and Cape Breton.

K: That sounds fine. We will have as much fun. I’m glad we will see the relatives’ places and graves. Nova Scotia and Cape Breton will be great.

M: So are you happy?

K: Yes, I’m very happy. Are you happy I’m going with you?

M: I certainly am!

K: I was hoping you would say that.

M: Look what I found in the attic, Kevin. Do you remember it?

K: Yes, it was my favourite J.J.. It talked and I pretended I was talking.

[J.J. is a toy figure modelled on a character in Good Times, a popular sitcom of the 1970s. It had a voice box activated by a pull string to say, “Dyn-o-mite!” and “I’m J.J., the king of the ghetto”.]

M: It was the only gift you ever paid attention to. You dragged it around all the time.

K: Yes, I really enjoyed it. I want to take it with me to the east.

M: Poor J.J. has lost his voice.

K: Now J.J. can’t talk but I can, and that’s what counts.

M: Yes. That’s a pleasant irony. Why do you want to take it on holidays with you?

K: Because it’s a possession of mine and a pleasant memory of my childhood.

M: Kevin, I think you have too many things packed. You don’t need towels or so many shoes. How be you just take one bag?

K: No, I like to bring lots of things for our trip, and I even want the towels and the three pairs of shoes.

M: Look, Kevin. The Miracle Worker is on TV. It’s the story of Helen Keller, who was both blind and deaf.

K: How could she understand anything?

M: At first she couldn’t. But her teacher was very patient and taught her sign language.

K: How could she see the signs?

M: She learned to feel them on her hand.

K: That’s wonderful. What is an asylum?

I have a way of running one thought into another on my memo writer. A speech pathologist explained that people who are dependent on assisted communication methods tend to do this. Whenever we get a chance to express our thoughts, we try to exchange as much information as possible.

M: It’s an institution. Helen’s parents thought they would have to put her in one, because they would not be able to handle her as she got older.

K: That would be terrible.

M: But they hired Anne Sullivan to teach her, and she was able to live a mostly normal life.

K: What could she do?

M: She wrote books, and encouraged other people to live enjoyable, productive lives whether they had handicaps or not.

K: I would like to read about her.

M: We’ll get a book.

K: So, where will we find one?

M: In a bookstore. Possibly on our holidays.

***

Living in the Eye

Just as it is never totally still in the eye of a tornado,

it is never still in my autistic world.

Even in my personal space

there is always sound, scent and colour.

 

Everything in the universe is composed of

numbers, symbols, music and rhythm,

which pulse and hum around me

in living colour.

 

When I first wake up,

I lie in bed listening to the singing of birds

and the whispering of the wind in the trees,

pastel colours floating in peaceful tranquility.

 

But the slightest anxious thought or feeling

sets the colours whirling

and when my emotions rise,

the colours shout like noises in my head

 

I live in a very complex world

amazing, wonderful, God-filled!

 

Autistics are unique and blessed,

also cursed.