Observations based on a typical day in the life of someone who was diagnosed as having strong autistic tendencies as a two and a half year old toddler.
I am awakened at 6:30 a.m. by a bluejay who has decided that it is 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.
Another area of sound sensitivities shows 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 often unnoticeable by most people.
I have sensitivities to sounds. When I was in grade school, my classmates used to call my name as softly as they could and see if I could still hear them. I could hear them from across the room and often 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.
During the 1970’s, as a holdover from the fears of the cold war, a siren would sound at noon every Friday causing many dogs to howl in unison with it. One day I copied that sound as it went off. I became aware of this when I suddenly noticed the whole class laughing. Needless to say I was quite embarrassed and was made sure that I didn’t forget that day for a long time.
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 my face as it was a male-type ritual. I told them it hurt. They said “Don’t be ridiculous.” 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 look for the day’s clothes to wear. It doesn’t really matter what they are as long as the socks don’t have a hole in them or the fabric doesn’t appear to be weak and I can see my toes or heel through the sock. There is something profoundly upsetting about wearing such socks and I don’t even like to see holes or weak areas on other peoples’ socks. If I avert my eyes when putting on such socks it may be possible to tolerate them… as long as I can’t feel where the holes are… which is usually not the case. Holes in an undershirt are only slightly more tolerable while holes in pants and other outerwear are not a problem. That new shirt, that was received as a gift must wait until it is washed before it is worn, as newly purchased clothes have a disagreeable smell.
I get on my bicycle and ride to work. Even though I got my driver’s license and a car when I was sixteen years old, I still prefer to ride my bicycle everywhere I go. Is this a stim? I don’t know. I still like spinning objects and a bicycle has many rotating parts. Sometimes my wife will drop me off with my bicycle 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.
At Work
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 professor. We exchange ritualistic greetings in Russian and agree to meet for tea at my office. We discuss our students. We both enjoy imitations and I am good at it so we spend the next half an hour imitating people we know in common. The overpowering smell of perfume wafts from the office below. Eyes watering, we decide to go to her office.
The Art professor 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. Unlike me, she appears to have had a fairly normal childhood. She enlightens me about all the “normal” childhood things that were done when we were younger.
She then goes to class and I go to visit the Dean of Business, whom I call my adopted dean. 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.
The Dean of Business doesn’t know my history and it wouldn’t make sense to lay it all out for him. I suspect 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.
Before I got to know and trust this man the way I do, we had a falling out. I had approached him during his tenure as Chair of Business with an idea of developing a music business program at our college. He told me that while this was a great idea, “… due to the fact that the business department was stretched to the maximum at this time, along with there being no budget for publicity.” He is honest and working so I took him at his word and didn’t think more of it. Later that week my dean asked me for a memo regarding my conversation regarding a music management program and I repeated his words verbatim on the memo. This memo was later forwarded to the vice president of academic affairs who interpreted that statement as my saying that the chair of business was lazy and had no energy to consider another program.
The Business Department Chairman got very angry with me and much yelling ensued. Enlisting the assistance of a friend of mine in administration, the problem was cleared up and the chair of business and I became good friends.
It had never occurred to me that whatever I wrote to my dean would be repeated verbatim and misinterpreted. The lesson from all this to me is that all written memos must be done as if anyone in the entire college might read them and that whenever there is a possibility that someone might look bad, special pains must be taken to prevent it.
Time for Electronic Music class. Prosopagnosia (a fancy word for facial recognition problem) rears its ugly head as it does for every other class I teach. I take attendance 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. This tells me to whom the work belongs. If I fail to accurately read this look or even catch it at all, then the homework gets passed out to the wrong person or not at all. When this happens I get embarrassed. These techniques I use to help in my facial recognition don’t seem to help much but then, again, I’d hate to see if I hadn’t discovered this tool.
These difficulties in differentiating between similarities appear to be restricted to facial recognition. Determining variations in two or more examples of text or graphical formatting, music and other objects is easy and enjoyable. In the case of examining text or graphical formatting, I seem to be able to catch what I term as formatting violations without even reading the content of the text or determining what the graphic is about. Determining content seems to be secondary to finding these errors.
When I was grade school, there were books that I would read over and over until they fell apart. On occasion I would find another edition of the same book and catch all of the differences between the first and the second. Of course, I liked the first version I came in contact with better then the second, yet I was always compelled to continue reading the other – slightly changed version – to completion. The same holds true and is more enjoyable for listening to pieces of music as I have several versions of given music compositions.
Music with Zack
After teaching other classes I prepare to meet a friend for a musically oriented 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 Pervasive Development Disorder – Not Otherwise Specified (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. In general, the pathways from the brain to the muscles for speech are intact. For Zack, however, these pathways 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.
With the assistance of his mother, Zack would be on task about 5-10 percent of the time. 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 as if he knew what loud sounds the cymbal could potentially make and was avoiding those sounds.
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. There was not much real communication between Zack and me. It felt like we kind of did our own things, side by side, in the same room. This is a common 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 opportunity for the little fellow to figure out what he was to do.
Connecting with Zack
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 rectangles about four inches high by twelve inches wide. Mayer-Johnson pictures are then taped on to oaktag squares about one and a half inches square. The oaktag squares have Velcro dots glued on to the back, which 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.
A time board was also used. Made in a similar manner as the activity board, the numbers one, two, and three, along with a sign of “all done” are used. The activity board gives the autistic child a visual representation of the activity. The time board allows the child to see the passage of time and gives him or her the comfort of knowing that the rest of his or her life won’t be spent doing this activity.
Finally, an additional small square with the words “do this” is used to get the child started on the task.
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. Stop
4. Put down stick
That was it!! Zack understood!! Zack demonstrated his ability to understand and do as I had asked. Mirroring what I did, he picked up the stick, tapped the drum four times, and put the stick down. I communicated with Zack!! Why? Here are the two important reasons.
1. A structure was built that he could understand.
The activity and time boards helped to communicate to him exactly what was expected.
2. The tasks were broken down into something he could understand.
I had climbed up to the highest tower, behind the great walls of the autism castle, and Zack, aware of my presence and meaning, had turned to look at me. Zack was very happy during that session. He gave me several hugs and showed pleasure. There were much fewer trips to the bathroom. When Zack understands what is expected of him and he can perform the task, he becomes very happy. And his happiness is very infectious.
This breakthrough in communication with Zack I credit mostly to his mother. She had come up with the idea of using the activity and time boards to communicate with Zack. Being able to visually represent our activities allowed Zack to understand what activity we were about to do. The time board was important as it allowed Zack to see the passage of time and not wonder if he might be spending the rest of his life doing a particular task. The parents of a child spend more time with him or her then any therapist or doctor can. They know their child’s likes, dislikes, strengths, and weakness. The parents are the experts on their children. Working with a child on the autism spectrum should also mean involving and working with at least one of the parents.
Back to Home
It is now about 4 p.m. and also time to ride home on my bicycle. It is raining but that doesn’t matter. Riding home on the bicycle sure beats the alternative of smelly public transportation.
I get home at about 4:30, relaxed by my bicycle ride. My wife is already home and we greet with mutually strong hugs and a kiss. As Chinese and American food is prepared for dinner we discuss the events of the day. The routine of doing this adds predictability and stability to the day. Following a post-prandial nap, ranging from 10 minutes to one hour, I work on preparing for the next day’s activities.
Excerpted from Shore, S. (2001). Beyond the wall: Personal experiences with autism and Asperger Syndrome.
Beyond the Wall is available at Amazon.com.