Childhood

The final example involves a boy born about three and a half decades ago who seemed to develop normally until the age of about 18 months. His parents were quite surprised find him turning over at only eight days. He was able to say "mama" and a few other words. Then something happened. The crib was the only place where it seemed this child felt safe. This crib was also used as a trampoline. For the next year and a half, there was no speech, self-distructiveness, spinning around in circles with his finger in his ear,etc. His physical development was extremely sophisticated for his chronological age.

Questions filled his mother's mind. She would call to him as he twirled in the backyard but there would be no response. If she went over and touched this child, he would grab her hand and go into the house for lunch. He was brought to the family pediatrician who said "He definitely not retarded; he may be autistic."

At age two and a half, he was diagnosed as having strong autistic tendencies by a team of psychologically oriented professionals at a childrens' center in the Boston area. The word "psychotic" was also mentioned. The center was reluctant to take on "such a sick boy" into their program and recommended institutionalization or foster care. The parents, believing that to be a suggestion with which they could not live, adamantly refused. The mother sarcastically said, "It is enlightening to know that they knew of these wonderful high-functioning psychologically oriented homes." The center agreed to take this young boy in a year hence. For all we know, this year might have been too late under different circumstances.

This was the era of the single income family. Father went to work and Mother stayed home to do housework and take care of the kids. The older brother and sister went to school and this boy was home with his mother.

His mother took it upon herself to work with this kid. She attempted to get this enigma of a boy of hers to imitate her. No luck. She then tried imitating this child's actions. Perhaps he would let her into his world by doing this. Then she would by able to draw him out of his world into hers. Slowly she was admitted entrance into his world. This approach was later used and written about by Barry Kaufmann in his book, SONRISE. The interesting thing is that his parents felt that this was the key to unlock the door before the Sonrise program existed.

Classical music played throughout the day as the mother hummed, sang and conducted the aural orchestra.

There was much work to be done. Going into the supermarket overstimulated the child to the point of tears. There was just too much sound, too many people and vendors offering tasty but unwanted food. He would sit at the end of the driveway smashing open small rocks with a larger one and seemed to be fascinated by the shiny, speckled bits of quartz on the inside. This interest grew into a substantial rock collection....which had to be lined up in perfect order. The mother must have done something right because at age four, when the child was admitted to the Children's Center, he was toilet trained and after a bought of echolalia, speech was well on it's way. The Center found it hard to believe that this was the same child they had seen one and a half years earlier.

Other interests of great intensity continued to visit upon the child throughout his public school years and beyond.

Airplanes, Astronomy, Bicycles, Earthquakes,
Medicine, Chemistry, Mechanics, Electricity,
Electronics, Computers , Hardware, Tools,
Psychology, Music, Rocks, Geology,
Geography, Locks, Cats, Dinosaurs,
Watches, Shiatsu, Yoga, Autism,

The child hated dogs, loved kittens and was terrified of the bathtub. A dog, with its unpredictable habits of barking and licking his face was too much to tolerate. Messy food was intolerable. The face and hands had to be wiped with a napkin after every bite. A breakthrough occurred at age five or six when the child was discovered to have made a royal mess of himself eating BBQ chicken wings followed by a huge piece of watermelon. The mother never thought she'd be so happy to see such a messy kid.

The child started public school kindergarten a year late. Public school at the elementary level was a disaster; both socially and academically. The other students sensed a difference and made life miserable for this child as is common for public school situations at this age. His teachers said that academics in math and reading were delayed. The first grade teacher said he would never be able to do math.

The parents were taken aback by the second grade teacher who said their child couldn't read. He was reading the newspaper at home. The reading comprehension assignments were a disaster. The interests listed just earlier held much more interest for the boy.

The Teenage Years

Things got better in junior high school and better yet in high school as the child discovered the music room and spent a considerable amount of time there. He had finished about 10 years of psychotherapy to exorcise the demons that created the autism. The counseling didn't cure the autism but did prove helpful for dealing with the number that autism will do on a person's psyche. For this reason only, I think therapy is good for dealing with the secondary issues that may arise from being autistic.

When this boy entered college he felt he had died and gone to heaven as the others there were more tolerant of differences amongst people. The child-now turning into a man found others that could appreciate him for what he was. During the last years of high school and throughout college he turned his interest in bicycles into employment at a bicycle shop. He owned a small bicycle shop that was used to help pay for school. This person still rides his bicycle everyday. His fascination with bicycles may have to do with that they have many spinning parts.

Once entering college, he never wanted to leave and still hasn't as he continues to study at one college while teaching at another one. The structure of the school day suits him well. At the undergraduate level he obtained two bachelor's degrees simultaneously:

1. Music Education
2. Accounting & Information Systems

This person drove his advisors and several administrative offices crazy as none of them could figure out what the heck he was doing. This student was the only one at his school to do get these two degrees at the same time and graduated with the third highest number of credits of anyone in the school. 224 credits to be exact.

Employment and Beyond

After leaving school he went to work at an accounting firm, from which he was let go after three months. Riding his bicycle to work and changing into his suit at the office was too weird for them. The place was riddled with NTs of a most virulent sort. This fellow then worked at a large bank for the next year and a quarter but was unhappy there. "I love the study of business, accounting and taxation but I can't stand working with the type of people who choose these areas for their careers," he said.

He left the bank to teach in a business vocational school, which was fine. During this time he returned to school to work on a masters in music. This person taught computers, math and business related courses to support his music habit. After finishing the masters and while working on the doctorate he managed to get a college teaching job as a full-time music instructor. Once again he thought had died and gone to heaven. He is still very happy at this place.

He is now married, finishing a doctoral degree and as mentioned above, teaches music at the college level.

Social situations and always doing what is appropriate can still be issues at times. However, he is now living a personally meaningful and productive life.

That person is speaking before you right now.

My paternal grandfather (died at age 76) was prone to depression. He was a lawyer, businessman and into real estate. My mother (62) is a recovering agoraphobic, she went to business school but never finished due to her dislike of the subject and her increasing agoraphobia. She underwent multiple years of psychotherapy until Dr. David Sheehan in Boston discovered Nardil to correct this disorder. Current research shows that Autistic traits run in families and I can see many of those traits in my mother. She says she saw them in her father.

My brother (37) is mildly retarded. He spent his public school days in special education rooms. He cleans tables at a local Papa Ginos. His reading is restricted to survival reading only. He can copy text and type it out but he can not do simple arithmetic or write under his own power. My brother had a period of drop seizures during puberty but which have now subsided. He does, however, have a phenomenal memory and notices any small changes in his environment. I wonder how much of his disorders are caused by retardation and whether some of them are caused by Autism.

My sister (39), father (65) and maternal grandmother (90) are pretty normal NT type of people.

Marriage Stuff

I have been married for almost seven years to a Chinese woman (37). We met in music school. She is an accomplished musician. My wife doesn't understand what Autism is about but still accepts me for who I am and the many idiosyncracies that I have. I am fourth-generation American and Jewish. This brings up the topic of socialization. I have always gotten along better with people who are not my own age or nationality. I suspect that is because I don't fit into what the typical NT white American would expect.People of different ages and cultures then mine may not know all of subtleties of how I'm "supposed" to act and thus accept me for who I am.

This is just a theory of mine which I'll hold onto until something better comes along.

©Stephen M. Shore

After receiving my bachelor's in Music Education and Accounting & Information Systems I set forth to work in a medium sized CPA firm. Boy was that a mistake. Thinking back to that time I realize that the place was infested with NTs of the most virulent type. Probably all financial institutions are. At that time I was not aware what I was getting into.

I was closely supervised and was expected fit in with all of these accountant/business types. The business uniform is the suit and tie......which drove me nuts. I can't stand to wear a tie. The only way I could survive was to ride my bicycle from where I lived (about 7 miles) to work and enjoy the out-of-doors for an hour and a half each day. It took 45 minutes to get to work this way as opposed to the 2 hours by public transportation. Made sense to me.

I kept my suit, tie, and shoes in the basement of where I worked and changed out of my "civilian" clothes into the business uniform. The personnel officer actually told me that I had better stop riding my bicycle and show up to work in "uniform." I was let go from that place after 3 months. They thought I was strange.

My next job was at a large bank as a portfolio accountant. I made trades for, received interest and dividends for, and created regular financial reports for $750,000,000 of pension fund money. I had now learned better how to blend into the business world. They tolerated my riding my bicycle to work. However, I was miserable being involved in the business culture. I left this job after 15 months to teach business at the vocational and college level.

The strange thing is, is that I find the STUDY of business, taxes, the stock market, etc. fascinating. I also enjoy TEACHING business subjects.......but not as much as teaching music. I just can't deal working with the type of people who are in this field.

I realized that teaching was for me. No close supervision. My supervisors and students were closer to accepting me as myself then in any previous position. They actually respected that I rode my bicycle to work. My next place of employment was at Katharine Gibbs, a finishing school for secretaries. [[**Danger, danger, Will Robinson**-->> from Lost in Space.]] Too strict a dress code. I was let go from that place after two years.

When I got my current job as professor of music and computers three and a half years ago, I thought I had died and gone to heaven. I could do what I loved and expend much less energy trying to blend in. As long as the students are happy, learning what they are supposed to, the administration is happy too.

There are some people there who respect what I do for the school and serve as mentors. They inform me of potential political blunders I may be about to make and are ready to help bail me out if I get into trouble. It is often difficult for me to read the political wind of things and I'm terribly to bully-types that cross my path.

Those of us in the Fine and Performing Arts are expected to be somewhat quirky and that suits me fine. By the way, I don't have to wear a tie!!!!!! Some people at work may sense that I'm different but 99.44% of the population there have no true sense of what I'm really about.

After this trip through various places of employment some things became clear to me. These tenants must be followed (by me that is) in order to survive as a full-time employee of an organization.

1. One must know themselves well enough to know where in the workplace they fit in. I seriously misjudged that as I entered the business world. The conformity along with the suit & tie thing just doesn't work for me.
   
2. Close supervision of my day-to-day activities doesn't work for me. I do much better if I'm given a task and a period of time to figure out what must be done; usually in a way that it hasn't been done before.
   
3. Find a mentor or mentors you can trust. They can save your employment life.
   
4. Having an interest in a particular field doesn't mean that it is good for you to work in.
   
5. There is more to life than work. [[Really??]] Yup!! I'm still learning that.

This is a hypothetical day in my life. All of the events are real; they just may not have all occured in one 24 hour period.

I am woken up at 6:30AM by a bluejay that has decided that it was time for everyone else to wake up too. It hurts. It feels like his beak is scraping against my eardrum. I close the window for another 30 minutes of sleep.

I have sensitivities to sounds. When I was in grade school, my classmates used to say my name as softly as they could and see if I could still hear them. I could hear them from across the room and even into an adjacent classroom. I remember one time a teacher doing a similar thing. He stood behind me and barely whispered my name. I sensed his presence and looked around. The whole class, teacher included, had a good laugh.

Currently, my sounds sensitivities show up when I listen to recorded music. It doesn't have to be loud, but if there is any harmonic distortion, my ears hurt. Imagine a small radio playing at full volume and you'll have an extreme example of harmonic distortion. In most stereo equipment this is unnoticable.......except by me.

Time to get up. My wife and I arise and do the usual morning activities of preparing for the day and eating breakfast. Time to shave....no I don't shave. Feels like a power sander scraping across my skin. I've had a beard almost from when I needed to shave. Using a razor hurt terribly. My parents asked me why I didn't want to shave as it was a male-type ritual. I told them it hurt. The said "Don't be rediculous". An electric shaver is tolerable if I don't use it often and on only the small portions of my face that I don't want the beard to cover.

I get on my bicycle and ride to work. I ride my bicycle everywhere I go. Is this a stim? I don't know. I still like spinning objects and a bicycle is full of rotating parts. Sometimes my wife will drop me and my bicycle off at the college where I teach but I will always ride home.

I call riding the bicycle to work the lazy man's way. It takes 20 minutes by bicycle, the same amount of time by car, and about an hour by public transportation. I avoid public transportation whenever possible. It is jam-packed with people like sardines, usually too hot, and quite smelly.

I lock up my bicycle, walk to my desk, change my shoes and pull on a sweater-vest Mr. Rogers style. I get to school about 2 hours before my first class. This gives me time to get oriented, work on projects and visit with other faculty members and deans.

I call my friend the Art teacher. We exchange ritualistic greetings in Russian and agree to meet for tea at my office. We discuss our students. We enjoy imitations and I am pretty good at it so we spend the next half hour imitating students, other faculty and administration. The smell of perfume wafts up from the office below. Eyes watering, we decide to go to her office.

The Art teacher is a special friend. We have exchanged histories and we enjoy looking into each other's world. She is my age, within a few months, and appears to have had a fairly normal upbringing. She catches me up on all the "normal" childhood things that were done when we were younger.

She then goes to class and I go to visit who I call my adopted dean. He is the Dean of Business. He is probably the most honest and straightforward man on the campus. Whether he knows it or not, I have designated him my mentor. I am very poor at reading subtle social situations. Office politics is full of that. This man helps me decode what is going on and how to act...or not act.

He doesn't know my history and it wouldn't make sense to lay it all out for him. I suspects he sees me as a hard working, interesting person who has much to offer to the college. He probably senses that I am "different" in some ways but that is about where it ends.

Time for Electronic Music class. Prosoprognosia (facial recognition problem) rears it's ugly head as it does for every other class I teach. I take attendence and look at everyone's face as they call out "here!" I then pass out everyone's homework. I call the names on the homework and wait for a look of recognition or expectation of receiving homework so I can see who to pass it out to.

These techniques I use to help in my facial recognition don't seem to help much but then again, I'd hate to see what would happen if I didn't do this.

After teaching other classes I prepare to meet CASinMA for a music therapy-like session with her son Zachariah. He is five and a half years old, born with a hole between the chambers of his heart, is officially diagnosed as PDD-NOS, and has apraxia of speech in addition to his PDD diagnosis. Those with autism have difficulty in speaking due to the neural set-up (or perhaps mis-setup) in the brain. However, the pathways from the brain to the muscles for speech are intact. These pathways for Zack are also miswired. Speech will probably not be his primary mode of expressive communication. He is nonverbal, save for about five words. His father, I believe, also lies somewhere in the Autistic Spectrum.

My first meeting with Zack was fairly uneventful. I played the piano while his mother attempted to get him to beat time on the drums with drum sticks. The child was on task for about 10 percent of the time we spent together.

The instruments I chose were, a set of tom toms and a cymbal. I decided against a snare drum as I felt it created too many complex high pitched sounds. I was wary about the cymbal too but took the risk.

When Zack did play the percussion, he played the drums in a musically sensitive way. What he did with the cymbals was fascinating. Instead of bashing them with the sticks and making a horrendous sound, he gently scraped the drum stick across the cymbal and made a soft sound. It was is if he knew what sound the cymbal could potentially make and was avoiding it that sound.

At least he didn't cry or have a tantrum. He communicated with his mother via a bracelet of small pictures she wore on her wrist. He made frequent requests to go to the bathroom which appeared to be an escape mechanism.

Zack did not like it when I played the piano. He would remove my hands from the keys and perseverate on the first three white keys on the left. I figured. "OK Zack, you play the piano and I'll play the drums" I'd go to the drums and he would remove my hands from the drums. His mother reported that Zack didn't like anyone to play an instrument, not just me.

The three following meetings went in a similar fashion. Not much real communication between Zack and I. It felt like we kind of did our own things, side by side, in the same room. Another trait of autistic play. I sensed that Zack had no idea what I wanted him to do. Since he had no idea of the objectives of the session there was no possibility of the little fellow to figure out what he was to do.

Feeling frustrated, I talked with his mother. We came up with the idea of using an activity board and a time board.

The boards are made with corrugated cardboard. The pictures are then taped on to oaktag squares. The oaktag squares have velcro dots glued on to the back, with are then stuck onto a velcro strip on the board itself. A velcro strip is also attached to the back of the board to store additional activity pictures.

The tasks Zack needed to do also had to be broken down into tiny steps.

1. Pick up stick
2. Tap drum 4 times
3. Put down stick

That was it!! Zack understood!! I communicated with Zack!! Why? Two important reasons.