Sir Ken Robinson (one of my favorite educators) speaks about events that changed the direction in his life and inspired his work in education.



While I seldom write about it, I think my own brush with cancer was a turning point in my life. At twenty-two, I was undergoing major surgery and the strenuous treatments that accompany a cancer diagnosis. I had it easier than many, but my time with cancer was by no means fun. It shook my view of the world and the way I prioritize my life.

So many things that seemed important to me before cancer suddenly became irrelevant. I started noticing people around me more – their lives, how I affect them, how they affect me. I remember one of my managers at the bookstore for whom I worked criticizing me for spending more time talking with coworkers and customers rather than shelving. What I didn’t know how to express then was that, for the first time ever, those people were suddenly more important to me than the objects I was shelving. I never returned to retail after leaving a month later.

Cancer had a humbling affect on my life, and it inspired me to see such a large number of people come together to help one person. Some of my fellow patients awaiting daily treatments were constant discouragements, but others were an inspiration. They looked to each day as a new day full of opportunity for recovery. They helped me see what a blessing life is, what it means to be thankful for every new day – even if that day brings a barrage of needles, radiation, and hair loss.

While I would never wish my experiences on anyone, I do think I came out the other side a better person.

Tags: education, memoirs

As I crossed the threshold from the bustle and controlled chaos of the hallway, and my right foot touched the carpet of my Analytical Geometry classroom, a sharp sensation shot up my spine and nestled into my neck and shoulders. It was a familiar feeling. I knew exactly what it meant. I was about to remember something important about this class.

I was supposed to do page 156, odd numbered problems 1-19. It was another assignment for which I would receive half-credit or nothing -- more likely nothing. There was little chance I would remember to do the makeup work once I left the room. I had a D in Analytical Geometry, not because the subject was difficult (nothing could be further from the truth), but because I was missing grades for most of my assignments.

Chances are, similar triggers would occur with each class I entered that day. Assignment notebooks were useless. I'd fill the pages out and forget to look at my notes later. As soon as I walked out of school, most things that happened that day simply disappeared from my mind. The next day, memories would flood back of various tasks and assignments I forgot to complete.

In school, Student Resource Time (SRT), became my salvation once we switched to block scheduling. As long as nothing interfered with my SRT time, I could remember to check on my schoolwork there. Slowly, i was able to broaden the context of my memory to include the entire school building ­ not just the specific classrooms in which the assignment originated. College was less difficult because there was enough downtime on campus for me to work on my work in a school setting. As long as I was on campus, I could remember to do my work.

I was accused of being lazy, of only remembering what I wanted. How could I consistently remember the specifications of the Enterprise NC1701-D or the order in which Andrew Lloyd Webber wrote his musicals, but I couldn't remember something simple like homework? The question baffled me. Truth be told, it still does. I'm always walking into work and feeling that old, familiar sensation of an important memory itching to suddenly resurface.

Contextual memory and the retrieval thereof is a challenge of autism with which I still contend. One solution I've found is to email myself things I need to accomplish. At home, I'll inevitably spend some time on the computer, at which time I'll see a message from myself about something I need to finish for work the next day. Also, I do a great deal of work-related stuff on my personal computer (a late-2006 MacBook Pro), thereby giving the machine a dual context.

Regardless, I find the workings of my memory a challenge that I haven't quite figured out yet. I'll let you know when I do.

Tags: asd, memoirs

This piece was a little harder to write than my previous reflection, and it was even harder deciding whether or not to post it. Unlike the story that reflects common issues I had in elementary school, this story is very accurate. Some very minor details have been fictionalized for the sake of narrative, and names have been changed, but this one is a very vivid memory. This narrative takes place nine years later than the first, and I was a sophomore in high school.

***

My mouthpiece is missing. The case for my mellophone is in its locker -- bay number 64, past all the woodwind lockers and next to the low brass. My instrument is in its case, but there is no mouthpiece in the case. I take fourteen steps to my French horn locker. It’s empty. Today is a gold day, no band or orchestra on gold days. They are both on blue days.

Marching band rehearsal begins in eighteen minutes. I cannot play without a mouthpiece. I cannot participate in practice without a mouthpiece. Conclusion: my French horn is at home. My mouthpiece is in my French horn case. My mouthpiece is at home.

Mom is at work. Dad is at work. Even if they could get off neither could make it to the house and to school in eighteen minutes -- now seventeen. I can feel myself starting to shake. My breathing becomes shallow and rapid. I know what’s coming, and I can’t stop it. Cold sweat beads up on my neck and shoulders, and the world becomes eerily silent around me.

Mom would take 12 minutes to get home (assuming she misses the light at 106th street, which is timed poorly) and up to 19 minutes getting back to the school -- more if the light at 98th street’s sensor is acting up again. That equals 31 minutes total drive time, not counting the time spent looking for the mouthpiece in the house. Dad would take almost 40 minutes to make it home -- completely out of the question.

Sixteen minutes. If I’m going to be on time for practice, I have to leave in one minute, and even that will cut it close. My friends have already left. I need to ask if anyone has an extra mouthpiece, but my voice has gone missing again. I hate that.

My hands are shaking so hard that I catch my finger in the latch when I close the instrument locker. I slip to the floor and begin rocking. How can I go to practice without my mouthpiece? I hate forgetting things! I hate how my memory seems to rely on location to work. I remember the mouthpiece in the instruments storage room. Why can’t I remember it when I’m someplace else?

My arms have scratches on them. I don’t remember those being there earlier. Scratches always appear on my arms when I’m upset. I look at my watch. Practice begins in two minutes. I’m too late.

I see the angry eyes in my mind of other band members and the directors as I imagine showing up late. I imagine the insults that will be hurled when they realize I’m not prepared to play. I’m immobilized by imagined cruelty, and my tumbling mind silently cries on the cold tile floor of the storage room.

I take 67 steps to the stairwell that leads to the practice rooms. I need to isolate. Now. 24 steps lead to the second level. Room 4 is small and has a piano in it. That’s the best room. The piano barely fits inside, but the strings vibrate very noticeably if you are playing in tune. I like that.

My trembling hand fumble with the door handle, closing it behind me as I collapse to the blue carpeted floor. I place my sweating face against the cold texture of the wall and try to slow my breathing. My mind is empty of thought yet full of fears, full of self-loathing. How can I be so stupid? How?

My head begins hurting, and I realize I’ve been hitting it against the wall. Pulling back, I clamber up onto the piano bench and begin playing chords. Harmonic intervals of two octaves, one octave, a fifth, a fourth, and a third produce the most calming vibrations. I hold the sustaining pedal down with my right foot and create the various major chords following this structure while I set my face against the piano’s smooth face board. I do this for a long time until I stop trembling, and my breathing returns to normal.

When I find my voice, I use a phone downstairs to call the band director I trust -- the one I’ve known since middle school. I leave a message for him saying I think I’ve had a breakdown, and I hang up. I don’t know what else to call it. I look at the clock. Practice will be done in 18 minutes. That’s where Dad will go to pick me up.

I stare fixedly at the ground as I take 3,154 very timid steps to the practice field, trying to be as small as possible the whole way, wishing I could somehow fold into myself and disappear…

***

The next day at school is terrible. Mr. Pike, the band director I don’t really like, tells me he never wants this to happen again, so it never happens again before marching band practice. On the upside, I’ll never forget my mouthpiece again because I’m not taking my French horn home anymore. If I leave it at school, I can’t forget it.

A saxophone player says that he’s sorry, but I don’t know why he’s apologizing. He didn’t leave my mouthpiece at home. Other students (and some adults) call me selfish, self-centered, irresponsible for not coming to practice anyway. The band director I trusted asks me how I think he felt getting that message at home, and how did I get his home number anyway? (It was in his own Rolodex on his desk next to his computer in his unlocked office.)

I know I’m not self-centered. I know I’m not irresponsible. I know I’m not selfish, but I have no answers. I don’t know what I am.

***

Asperger Syndrome was defined in the DSM-IV for the first time this very same year, but it would do me no good at the time. However, this incident was a turning point in that I finally became acutely aware of just how different I was from other people around me, and I began to develop the public character that I still rely on to this day. Great growth came from this one terrible event, and I finally began developing friendships and social circles through which I would later meet my wife.

Still, it would be another eight years before I really had myself figured out.

Tags: education, memoirs, asd

I wrote the following memoir as an assignment for a literacy conference session. It has received some minor edits (listed at the end) from the original but remains largely unaltered. This was scribbled in my notebook over a period of about twenty minutes in the middle of the night while my roommate snored loudly. This is actually fictional, but it is typical of my early school experiences.

There are twenty-two desks in the classroom, eighty-four ceiling tiles plus or minus a few (based on perspective, light arrangement, and wall irregularities), twenty-five cubbies with coat hangars, and one sink with a step stool in front of it.

Nineteen students (counting the author) occupy twenty-two desks. It takes three hundred eighteen steps to get to the cafeteria, eighty-six steps to accelerated math, twenty-eight to the sink, and fourteen to the right cubby – except a direct fourteen-step route makes for a bad day because “14” (like the letter “N”) is uncomfortable.

Teacher Miss Hiles is five feet, four inches (which equals 64 inches in all or 162.5 centimeters). She has been reading for four minutes or 240 seconds. Thirteen words have already begun with the letter “N.” If one more happens too soon – before the brain loses count – this won’t be a good chapter.

“Robert, are you listening?” Teacher says. That is not part of the story. It makes no sense. Ramona was just trying to convince her father to stop smoking after being caught throwing away his cigarettes. Ramona books are by Beverly Cleary who is a better author than Judy Blume because Fudge is annoying. There are three Ramona books at home, and “Robert” in not a character. Did Teacher mean “Ramona?”

“Robert, what did I just read?” What. When. Where. Why. They all sound the same. They are okay in writing, but they aren’t good out loud. They are okay in a book because the book gives the answer. “Romana, why did you throw my cigarettes away?” And Ramona gives a reason. “Why,” in this context, looks for motivation, but why can also mean different things. “Why, look at that rainbow!” Teacher says to listen for something called “inflection.” She once said sentences using different inflections, but they all sounded the same.

“Robert.” There is no Robert in this chapter! Romaona’s dad is Mr. Quimby. Here sister is Beatrice, but she calls Beatrice “Beezus,” and Beezuz is friends with Henry Huggins. Ramona was first introduced in the Henry Huggins books, and she got her own books later. This is called a “spin-off.” This fits Ramona because she likes to spin. She also likes to make curls go “BOING,” and she likes to make noise with Howie. Maybe Howie will get a spin-off.

“Robert, have you listened to a word I’ve said?” Teacher says louder to … to me. She takes some glasses out of a pair of hands. My hands. She puts the glasses on my face. “Robert, you’re daydreaming again. Can you tell me what we’ve been reading?”

Of course I can. I can tell her all about Ramona and her father, but my voice has gone missing. So I just look at my desk. I don’t expect to find my voice on the desk, but looking at the desk avoids all of the frightening faces looking in my direction.

Teacher shakes her head and says she will have to talk to my parents about my daydreaming again. It will be the fourth conference this school year. This is September. September has thirty-one days. Today is the twentieth. A Friday. Birthday was on August twentieth – number six. Six-years-old means kindergarten for some born in August, but I went to kindergarten at five. Something called an I.Q. (or “intelligence quotient”) is 135. I know that “intelligence” means how smart someone is, but “quotient” is a mystery.

I tried to find out by reading every “K” word in the dictionary (American: of or associated with the western hemisphere; Heritage: background or history) – all 2,180. It took five days to read them all. Anyway, it is likely that a quotient has to do with daydreaming. Dad says it has to do with division. “Division,” “daydream,” and “dad” all start with “D,” and you can use the letters in “daydream” to make “dad” as well as “yard” and “dare” and “made” and “ram” and “mare” and …

“Robert!”

I stare harder at the desk. Still no voice.

“Robert, if you are not going to listen, just go sit in the corner.”

I sit in the corner and try to be small. I’m very good at small. You’d be surprised at some of the places I can fit into. When I’m small, my voice comes back, so I count to feel better. Numbers (except for 14) are nice. “1, 3, 5, 7, 9, 11, 13, 15, …”



The next day we are supposed to write about a favorite book. My paper is about Ramona. I use a pen because pencils give me the bad kind of goose-bumps. So does chalk and velvet.

I write more than anyone in class. My voice was on my desk all along. It was hiding inside my pen.

Alteration from the original:

• The classroom originally had more ceiling tiles, but I felt a smaller number was more accurate. A part of me wants to go back and count.
• I double-checked my Ramona facts. Nothing to fix.
• I changed my teacher's name to keep her anonymous.
• In the original manuscript, I counted by fives. Though I liked fives, chances are I would have counted by odds if upset. They required more concentration and would have better served to take my mind off things. Primes serve that purpose well nowadays.

Tags: education, memoirs, literature, asd

April is Autism Awareness Month, so I thought it was about time I had a coming out of the closet (no – not that closet!) party for myself. Simply put, I have Asperger Syndrome, a pervasive developmental disorder closely associated with autism. To some of my peers and colleagues, this may come as a surprise. Others may have seen it from a mile away (as one told me when we were talking about this a couple of weeks ago). For most of my adult life, I have tried to hide behind a facade of being neurotypical, but I have finally come to terms with this enough to openly talk about it.

My History As An Aspie

The term "Asperger Syndrome" was not coined until 1981 (despite initial research being conducted nearly 40 years prior), and the diagnosis was added to the DSM IV in 1994. As a result, I was a freshman in high school before there was a category for my behaviors and social difficulties. During elementary school (in the 80s), you really fell into one of three categories: hyperactive, retarded, or "get over it." Autism at the time was considered a form of mental retardation, and you had to be pretty low-functioning to be labeled as autistic.

Since then, more study has been conducted on the broad spectrum of autism and related conditions – referred to as pervasive developmental disorders (PDDs). Unfortunately, this work was of no benefit to me as I struggled emotionally with the difficulties of my condition; I was the weird kid, a target for bullies, and a loner. I found more solace in my collections than in other humans. Mind you, this is not meant to create a heart-wrenching drama. I'm just putting things in perspective.

I became what seemed to be a very self-absorbed adolescent, which is a common perception of many individuals with AS. Friendships were rocky and short-lived. I absolutely could not handle rejection of any form, and I was slumping into deeper and deeper depression as I entered high school. I was a complete and total mess. I would even make up elaborate lies about my health or some other aspect of my life in order to create some kind of connection (even if it was a fraudulent one) with my peers.

Then something happened. My sophomore year in high school, I began emulating behaviors of individuals I felt were socially successful. Over time, individuals like Ben L. & Kevin S. at church became social role models (though they were unaware of their status), and I learned my facade – a facade I still implement to this day when I am in social situations. Internally, I was still a wreck, but I could talk a good talk, and that made school easier. My last three years at high school were great, and I even met my wife during this time period!

Interestingly enough, it was Crystal who, while majoring in psychology in college, first brought up autism as a possible explanation for my bizarre private behaviors – rocking ceaselessly, finger biting, repeating phrases, seemingly unpredictable outbursts, aversion to spontaneity. However, I had not experienced a language delay (one of autism's defining characteristics), nor did I seem to experience the physical seizures that sometimes accompany the condition. In contrast, my linguistic abilities as a child were quite pronounced, and I often read books far above my grade level.

I had been teaching for a year when I met a child who could have been my clone. Physically, emotionally, and socially, this child was me all over. He was a fifth grader, and his teacher (the talented and lovely Ms. Hill) was convinced he was autistic. His fourth grade teacher (the equally talented but not-quite-as-lovely Mr. Hall) shared the same suspicions. However, his parents were extremely reluctant to concede to testing. Ms. Hill did not want this child to enter middle school without the proper services in place, so she was persistent.

At the time, I was mentoring this child, and I was making as many discoveries about myself as I was helping this child with. If he was autistic, surely I had to be. We had a very good bond, and his parents were quite fond of my involvement with their son. Consequently, in mid-Spring, I sat down with his mom and dad and spelled out the fact that there was a good chance that I'm autistic. Their son was a carbon clone of my former self, and they would be doing him a disservice by not having him tested. They agreed.

When the test results came back, autism was not the label. Asperger Syndrome was, and, at last, I had my diagnosis. AS fit me like a glove, but I remained very private about it, confiding only in a handful of associates. I even kept my direct supervisor out of the loop until March of this year (and I've been employed in the same place for five years now). You see, I was grateful to finally have a clear picture of myself, but I've been terrified of how others would react.

Behaviors & Workarounds

Many behaviors associated with Asperger Syndrome permeate my life, and, at home, these behaviors can be very pronounced. However, in public, I can usually temper them enough to avoid looking too strange.

Talking to Myself. Let me set the record straight: I'm not actually talking to myself. I'm holding a hypothetical conversation with someone who's not there. For example, if I'm thinking through a problem regarding helping a child read, I may pretend I'm talking to one of our literacy coaches, and I try to verbalize how I think she would answer my questions or constructively criticize my ideas. Most of the time, I can avoid doing this when people are around.

Self Stimulation. "Stimming," Stereotyped behaviors, what ever you want to call them – I can avoid most in public except for the rocking. I usually just pretend I'm cold – which I often am anyway, but it has nothing to do with the rocking.

Echolalia. This has always been sporadic. I'm much more likely to repeat myself than I am to repeat you. If I do repeat you, I've learned to turn the voice inflection to sound inquisitive. It's like the old joke about psychiatry: turn the last word of your patient's last sentence into a question, and you sound interested.

Eye Contact. I'm looking at the bridge of your nose or your eyebrows. Most people can't tell the difference.

Literalness. I still have struggles with this. I answer rhetorical questions. I take sarcasm seriously (though I understand how to use it thanks to Peanuts). I'm pretty good at noticing idioms and figures of speech when they are used, but that doesn't mean I necessarily know what they mean. My wife finds endless amusement in this fact, and my reaction to the first time I heard the phrase "Quit Cold Turkey" is a running joke around our house.

Emotional Vacancy. I can emulate the proper voice inflections and facial expressions for most emotions. Empathy is still a major challenge to demonstrate. It does get on my nerves when the term "emotionless" (or something similar) is used to describe AS. We experience the very same emotions you do. We just express them differently, and we have as hard of a time reading your emotions as you do ours. It's not a lack of emotion; it's a lack of nonverbal communication interpretation.

Meltdowns. I prefer the term "social seizure" because that is exactly what these feel like. I can usually defer these when others are around. In other words, I can put it off until later. Usually, I become very quiet when a social seizure is about to hit, and I may seem completely non-responsive for a moment. Then, I'll pop back to being engaged. I haven't avoided the meltdown. It's merely waiting in the sidelines until I'm alone. Noise is a huge trigger for me, and I've been accused by colleagues of going too easy on my classes when they become rowdy. The truth is that I am trying so hard not to inappropriately overreact that my behavior swings to the polar opposite. This is actually a huge area of challenge for me working in an elementary school, and it is the sole reason I seldom accomplish much during my prep periods.

I could really go on ad nauseam here. Really, an individual with Asperger Syndrome may have deficient coping skills, but his self-help skills are in tact. Once I figure out that a certain behavior of mine may seem odd to peers, I can usually find a way to mask it. Please understand, though, that this does not mean I have eliminated the behavior – I can only keep my act up for so long. Sometimes I do social seizure in public. Sometimes I do stare at the floor while talking to others. Sometimes I do pick at my face or chew my fingers in public. My seemingly outgoing and personable facade is just that: a cover. It is an act that takes concentration and energy to maintain. Some days are easier than others.

The Trade Off

Do I view my condition as a disability? Yes and no. Socially, Asperger Syndrome has leveled a heavy price in my life. I have few close friends. Many of my peers view me as eccentric or strange, and I do not fit in well during social events. I have a hard time engaging others in conversation, and I am much more likely to eat at a table by myself than I am to approach others or be invited by others. I come of as a trifle self-centered because I will try to steer conversation to topics I am interested in – topics many others find dull or tedious. No matter how many people I am around, I am still very much alone.

On the other hand, I am very smart. However, I do have a hard time broadly applying acquired skills and knowledge. I was reading Beverly Cleary & Judy Blume at six and Tom Clancy & J.R.R. Tolkien by the time I was twelve. In middle school, high school, and college, I would test very high in math, even when being tested on material for which I had never received formal instruction. I just "get" computers. One could say I like computers more than most people (by which I mean, I like most computers more than I like most people). I hold my own when watching Jeopardy, and I'm better at Double Jeopardy than the first round; Old Testament names give me very few problems; I am a Scrabble freak.

In other words, Asperger Syndrome is really a trade off. My IQ hovers around 130-140. On the other hand, my unaltered EQ is probably <80. (I say "unaltered" because I am quite capable of acting like an individual with a much higher EQ for a few hours at a time.) What I've lost in one area of my development I've made up for in the other.

The End

So there you have it. I'm outed, as the saying goes. Hopefully this entry helps you understand me a little better, and I will continually try to find ways to improve my methods of handling my condition. I have no desire for a cure (if such a thing is even possible – a discussion for another post), and medication of any kind is very aversive to me. AS is part of who I am and part of my individuality – something I do not want stolen from me. Asperger is my buddy, and, now that we're all acquainted, I hope we can get along.

Tags: asd, memoirs