Quiet Desperation, A Life on the Autistic Spectrum, Part 1: Before Diagnosis

Forward

I first began this work as a letter, never actually intending for it to be read, not even by the person to whom it was originally addressed.

A case of writer's block one day caused me to sit down and begin writing, regardless of the lack of relevancy.

For the next hour and a half, I worked passionately on an incident that happened when I was thirteen. By the time I was finished I had the story of Aurelia, Penny, and myself (Chapter 8) down on paper, and, I had also found something else...catharsis.

It was such an liberating feeling that I immediately went backwards in time to my birth, eventually working forward to the age of thirteen, and then hurriedly on to the catharsis I really needed...eventually I finished a rough first draft of this book. For a while I had it on a personal website of mine, and then it sat on my computer for a few years.

Then one day my wife came across a magazine article concerning children & autism. The more she read, the more she realized the symptoms seemed to be describing me.

Asperger's Syndrome.

Of course I was certain I couldn't be autistic, but then the very first symptom she pointed out was difficulty making eye contact.

Hey wait a minute... actually, I have that problem...and I've had it my entire life.

So, I started my own investigation, online research, even took a few online psychological tests, all of which pointed in the same direction: there was a very strong possibility that I was indeed, an aspie.

Finally, at the age of fifty-nine, I was formally diagnosed with Asperger's Syndrome.

Fifty-nine years. Unaware there was even a name for this.

Coming back to this book there was suddenly so much stuff in my life that seemed to link to Autistic Spectrum Disorder--and of course, I had never known it even existed.

For the most part, my main goal in writing this was simply to `get it down' as quickly as possible.

I do not claim to be a writer, but then again, this is not a work of fiction.

J.C.L

Chapter 1: Beginnings

St. Joseph's Hospital, Fort Worth Texas, 15 August 1952.

I enter the world, weighing 7 lbs., 14 oz, or 3.5721 kg.

My parents, Charles Robert Livingston, a 23 year old Baptist Minister born in Kansas, and Elizabeth June Livingston, a 21 yr. old housewife born in Oklahoma, just happened to share the same last name, so an 'e' was added to Livngston, and thus they became Mr. and Mrs. Livingstone.

On the birth certificate a Dr. J. H. Steger stated that he had attended the birth of this child, who was born alive, on the date stated above, at 5:01 a.m

Braman, Oklahoma circa 1953

During the hot summer months a black electric fan sat at the foot of my bed. There was a sliding control switch in the base which had three speeds in addition to the off position: low, medium and high. As it was turned on, the three blades would slowly begin to whirr, creating a low whistling sound that always had a calming effect on me.

However, late at night, in the semi-darkness, the familiar object became submerged in shadows taking on vague unfamiliar shapes, making me more than a little uncomfortable.

We lived next door to the Baptist Church, where my father was pastor. Inside the house the walls were adorned with brightly-colored wallpaper which featured roses in full bloom, as viewed from various angles.

The state of Oklahoma is located in an area known as Tornado Alley, and I saw several tornadoes during my childhood, the first one being in Braman. One stormy night a group of people were gathered in a building, perhaps a basement. A door was opened and I was permitted a look outdoors at what must have been a rare close-up view of a tornado, but all I could make out was the black silhouette of a building, which seemed to have a steeple.

For sometime afterwards, I thought tornadoes looked like that, and for a while I wondered why people were so threatened by them.

I also remember a man wondering out loud what would happen if the tornado was to hit the wall directly in front of us; it didn't exactly calm my fears.

Blackwell, circa 1954

Around 1954 we moved to Blackwell, Oklahoma, where my father was associate pastor of that city's First Baptist Church. That was also the year my brother Terry was born.

This church had a separate auditorium upstairs. One day as my brother and I were playing there I looked up and saw an older bald man in a red uniform, a style of dress that definitely didn't belong there. He didn't speak, but simply stood at the pulpit observing us. I don't think anyone else saw him-- or maybe no one else could see him.

Less than a block from our house was a neighborhood grocery store, where we often bought candy--a package of Wrigley's gum sold for ten cents, and there was a lot that could be had for a penny.

Large Tootsie Rolls were priced at a nickel, the small ones a penny.

There were also Tootsie Roll Pops (2 cents), Life Savers (10 cents), licorice sticks (a penny each), M&M's (5 cents), and Milk Duds(5 cents).

Most of the pennies in circulation back then were the 'wheat' pennies; most of the dimes were 'Liberty' dimes; Buffalo nickels were common, as were Franklin half dollars.

On the way to this store was an old abandoned school building, or at least that's what I thought it used to be.

As my brother and I were walking home one day, candy in hand, we noticed the doors to this building were open, which was unusual.

We had always felt this building to be haunted, and I distinctly remember gazing in the windows and seeing white shapes appear and disappear many times.

We cautiously crept toward the door, and I thought I could barely make out an old pump organ inside.

Suddenly from out of nowhere two men appeared on each side of the door, making a low growling sound. We dropped everything and ran home as fast as we possibly could.

Across the street on the corner lived an older girl whose name I seem to remember as either Cheryl or Nancy, I'm inclined to believe it was Cheryl, as I have a memory of The Four Seasons' recording of Sherry having some connection with her.

We had a yellow swing set in the yard, bunk beds in our bedroom, the top occupied by me.

I was lying in bed one night listening to my parents' voices in the living room, when the door opened and in walked a six-foot bear, fully dressed and walking on two feet. I was so terrified I could not speak or move.

In front of the bedroom window was a yellow table, upon which set a large stuffed dog.

Frequently at night this dog also took on various shapes in the dim light, most often a large pelican-shaped bird.

More than a few times I also awoke to the sight of a shadowy man standing on the window sill, his hands holding on to the curtains, while dozens of miniature men hammered away on his body. I was transfixed, but I don't think I particularly felt scared.

The house in Blackwell featured a screened front porch, ideal for indoor riding of tricycles on rainy days.

There was also a back porch, where I remember sitting on the floor and seeing something grayish running very fast across the floor, so fast I thought I'd imagined it.

Turned out to be mice.

It was around this time my parents hired an older woman named Opal as a baby sitter.

I remember this woman because she brought with her an unusual present for young children: hi-fi recordings of Strauss waltzes, Rimsky-Korsakoff's Scheherazade, and a collection of 'The World's Greatest Overtures, all written by Rossini, and including the William Tell Overture. I of course could not yet read, and so had no way of knowing which side of the record featured the William Tell so I would just have to guess.

Some other recordings in our home were the Oklahoma! soundtrack, an extended play 45 rpm album of The Student Prince, which I believe featured Gordon Macrae in the title role, Fred Waring and the Pennslyvanians in Hi-Fi, a 45 RPM single recording of Jose Iturbi playing Chopin's A-flat Polonaise, a 78 rpm album featuring Oscar Levant performing Rhapsody in Blue. These I listened to over and over.

The house also had a large (I thought) back yard with a mulberry bush, that gave us delicious fruit. At the very back was an alley with a fence where the trash cans sat. This area was covered by some large plants of some sort, I'm thinking it was corn.

Around the age of five, I was playing there and raised myself up to look through the corn stalks when a woman appeared out of nowhere, seeming to find a lot of humor in the fact she had scared me to death.

I also have a rather vague memory of this same woman in my father's office sometime later, and I of course had nothing to say to her. (I obviously didn't think it was funny to frighten little kids, being one myself.) I had never told my parents about the incident in the back yard so they probably had no clue why I refused to talk to her.

Perhaps this was why they took me to a child psychiatrist, I think somewhere in Oklahoma City. I remember while he talked to my parents he put me in a large room that was filled with every kind of toy imaginable, but of course this did nothing to alleviate the intense feelings of uneasiness; I still don't know if I was being watched through a one-way mirror or not.

This so-called doctor decided I should be put in a hospital for some sort of tests. This was so traumatic for me I've probably blocked most of the memory but I remember running away from the nurses to a waiting room, hoping my parents would be there, but of course they weren't.

I don't seem to remember ever actually having any 'tests' performed on me, but there is a hazy memory of a conversation with a girl about my age who was lying on a table with some sort of cone-shaped metal object on her head...or this might be from the nightmares that I was to have later.

I now think this whole incident would never have taken place if this doctor had known anything about autism spectrum disorders. A lot of this memory I can't seem to access very well, although I remember things before that time period.

Within walking distance was an outdoor circular wading pool, but further away across town was a public outdoor pool, which I still have fond memories of.

It actually consisted of two pools--a wading pool for younger children and the larger pool for older children and adults.

For some reason, in front of the pool's entrance was a scaled-down replica of the Statue of Liberty.

The wading pool featured a bluish-green mushroom-shaped fountain that had water cascading over the top. I remember yellow-gold beach balls, and the songs Who Wears Short-Shorts and Tequila! blaring from loudspeakers that were connected to an AM radio.

Rock & Roll was in its infancy and although I wasn't yet seven years old, the little of the music that I did hear was to have a profound effect.

About 1959 my parents bought an oldsmobile that had a radio speaker above the back seat.

Percy Faith's recording of the Theme from A Summer Place was released that year, and it was my all-time favorite song. Radio station KVOO in Tulsa would sometimes play it and I would sit on my knees peering out the rear window with that wonderful song coming from the speaker.

I started kindergarten in Blackwell, at Washington Elementary School in 1957. I lived within six blocks from the school, and so was able to walk.

Along the walk to school was a field--I remember it being full of violets—viola.arvensis

Kindergarten was taught by a Mrs. McGee, and the main things I remember are a set of toy bricks, a lot of coloring, and some finger-painting. The playground included a game called Red Rover.

At the end of the year graduation ceremonies were held, with diplomas and the traditional cap and gown.

1958 was also the year my youngest brother Michael was born.

The next year I entered Mrs. King's first grade class, where we were sometimes divided into groups of five or six, and read our first words by associating them with pictures cut from a magazine. I definitely remember learning the word gun this way.

I entered Mrs. Butler's second grade class in September of 1959, but in February my father became pastor of the First Baptist Church in Barnsdall, Oklahoma.

This was to be the site of some of my happiest years

Chapter 2: Barnsdall

The town of Barnsdall was originally known as Bigheart, after James Bigheart, the chief of the Osage Tribe. It officially became a town on 27 January 1906.

In May of 1921 The Barnsdall Refining Company, owned by Theodore N Barnsdall, (1852-1917) acquired the Bigheart Producing and Refining Company, and in June, 1921 a petition to change the town's name to Barnsdall was published in the Bigheart Times, and so on 1 January 1922 the town of Bigheart, Oklahoma officially ceased to exist.

About 1925, a building which had stood at the corner of the elementary school playground was damaged by fire and was offered for sale by the school board. The church bought, repaired and remodled the property, and moved it next door to the church, where it became the church parsonage, our house.

Total cost: $300.00.

On moving day the movers were throwing away their still-lit cigarette butts on the ground as they worked. Being all of seven years old, I remember picking at least one of them up, and I think I actually took a puff pr two.

Almost immediately upon our arrival my brother Terry and I ran up the front steps of the church, where we climbed over the side of the porch, hanging on to the side of the church building's front entrance, which was maybe a ten-foot drop to the ground.