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STEPHEN M. SHORE, BA, MA, EdD

Age: 50

Resides in: Newton, MA

Occupation: Assistant professor of special education, Adelphi University, Garden City, NY

Marital status: Married 21 years

FROM TEMPLE:

Stephen worked hard and achieved success by becoming a professor at a university. He was very resourceful and set up a bike repair shop in his dorm room to pay his way through school. Stephen has authored several well-known books, and I love his overall positive view on life. Dr Shore still experiences some sensory difficulties, and when there is too much noise and commotion, he has to get away. Despite these challenges, Dr Shore’s story illustrates how hard work and ingenuity can lead to success.

STEPHEN’S INTRODUCTION

At this time, I have been an assistant professor of special education at Adelphi University for 2½ years. In addition to my teaching duties, I develop curriculum and teach courses on autism and special education. I work with students who are preparing to become teachers, as well as those who want to update and increase their knowledge about autism and/or special education. I also teach students from the schools of psychology and social work. With committees, projects, collaborations with others to develop programs, and outreach to area schools, I find this career very rewarding. My research focuses on comparing different approaches, such as applied behavior analysis (ABA), Treatment and Education of Autistic and Communication related handicapped Children (TEACCH), Daily Life Therapy, the Miller Method, and Floortime, with the goal of applying the best practice to the needs of individual children on the autism spectrum. Because of the great diversity of the spectrum, it makes no sense to me to try to prove which approach is the best one overall.

The things I like most about my job are preparing for classes and teaching students about autism and special education. I also enjoy collaborating with my colleagues on instruction, curriculum building, and research. I tend to get very good teaching evaluations, averaging in the low-to-mid “1’s” on a 4-point Likert scale, where 1 is the best score possible. Knowing that I am contributing to the field of education is very important to me. And that is verified every time students tell me in an unprompted way that they enjoyed my courses, when they reconnect to report that they have found teaching jobs, or when they reach out to ask for advice as they go on to educate students with autism and other special needs.

One dislike about my position relates to the sometimes long meetings that seem to consist of “data dumps” of information that could be read online, when a lot of time is spent between two or more people bickering about something, or when the gathering drifts off the agenda and runs overtime. However, I realize that, in addition to the things that do get accomplished at these meetings, in some ways they also contribute to the social cohesiveness of the various departments, as well as the various schools and the university at large.

One challenge I have overcome to some extent is managing subtle social situations and office politics. I continue to work on this. To help in this area, I make liberal use of mentors I can trust to help translate what is happening, decode the “hidden curriculum” of the workplace, and help prepare for when I do have to get into situations that require me to read “between the lines.” That said, having good mentorship can be vital to achieving success in the workplace.

In all, I find my position serving as an assistant professor at Adelphi University very meaningful, and I plan to continue teaching there as long as possible.

EARLY YEARS

I am the youngest of three children. My brother, Martin, is 2 years older. It was clear that he had difficulties at birth and later received a diagnosis of mild to moderate retardation. He has certain skills that make me wonder if he has some autistic characteristics, as well. Most of the time, we got along fine and had the usual sibling rivalry. Here’s an example of a misunderstood sensory event. One day, while we were playing on a swing set, I was sensorially overloaded by contacting the cold bars of the gym set with the underside of my knees. This caused a meltdown, and I banged my head against some flagstones and had to get stitches. It was many years before I told my parents that it was in fact the sensory overload that had caused the incident, and not anything my brother had done. On the whole, we were expected to treat each other civilly and help each other when needed.

My sister, Robin, is 4 years older. I used to think she got all the “neurologically typical” genes, but I am finding out that’s not entirely true. For example, as a child, my sister used to yell at me for making too much noise as I walked around my bedroom, which adjoined to hers. In a recent conversation with her, I found out that she has significant hearing sensitivity.

After my first 18 months of otherwise typical development, I lost functional communication, had meltdowns, spun in circles, and demonstrated several other autistic characteristics. Because my brother had received a diagnosis of mild to moderate mental retardation, my parents knew it was not that. They suspected I was intelligent, and upon the urging of their pediatrician, at the age of 2½ I received a diagnosis of “strong autistic tendencies, childhood psychosis, and atypical development.”

My Parents Kept Me Out of an Institution

Fortunately, my parents refuted the recommendation to have me institutionalized (thought to be warranted for such a diagnosis in 1964) and advocated for my admittance to the James Jackson Putnam Children’s Center after a delay of a year and a half. In the interim, my parents provided what we would today refer to as an intensive, home-based early-intervention program that emphasized movement, sensory integration, music, narration, and imitation.

At first, my parents tried to get me to imitate them—especially my mother. When that failed, they started imitating my sounds and movements, which made me aware of them in my environment. Only then were they able to pull me out of my own world and into theirs. In my experience, the most important educational implication has been that before any significant teaching can happen, a trusting relationship has to be developed between teacher and student.

I Took Watches Apart and Put Them Back Together

At age 4, I started dismantling watches with a sharp kitchen knife. When my mother saw me demonstrating this skill, she began to provide me with additional watches, radios, and other things to take apart. Also, my parents both sat with me to make sure I got these things back together again in good working order! It was not hard for me to reassemble these mechanical devices. However, it was an important lesson my parents imparted—that if I took something apart, I should be able to put it back together again.

My mother did most of the caretaking and “early intervention,” because in those days, it was the father’s responsibility to work and earn money. Additionally, I think my father was pretty confused in terms of what to do with me. However, he still loved and supported me the best way he knew how.

My Parents Expected Proper Behavior

My parents expected me to show proper behavior at mealtimes, chew with my mouth closed, ask to be excused at the end of the meal, push in my chair when leaving the table, and participate in family chores, such as clearing dishes, taking out the trash, walking and feeding the dog, taking care of the cat, mowing the lawn, keeping my room clean, shoveling snow out of the driveway, and doing laundry when I was older.

Being Jewish, I was expected to go to religious services on Sundays and to attend Sunday school, just like my sister. My brother, who had more cognitive difficulties, did not have to go to Sunday school but still had to sit through the Sunday services, most likely because there was no special education version of religious school at that time. Sunday services and school also meant changing into nice but scratchy clothes, which I took off immediately upon returning home.

My brother and I both had bar mitzvah ceremonies at age 13, as is customary. Again, because of my brother’s cognitive challenges, his requirements for reading and reciting Hebrew were limited to repeating another person as they recited short phrases in Hebrew. However, I was expected to do everything the others did, which I found exceedingly challenging. When I failed to improve with private tutoring in Hebrew, my parents made a recording of one of the elders at the temple, who recited the entire passage from the Torah that I needed to learn, plus all of the important prayers. Because the words were chanted in a singsong voice, they were easier to remember.

I put on a good show at the bar mitzvah, reciting everything in a sort of echolalic fashion, right down to the gravelly old voice of the elder who had recorded what to say. I had no idea what I was saying, other than knowing in a general way that I was talking about the first three days of creation, which I had read about in an old bible we had at home. However, it worked!

I Had to Earn Money for Things I Wanted

My parents addressed whatever basic needs we had. But if I wanted something extra, I had to earn the money to pay for it. For example, I wanted a new, “grown-up” bicycle that cost $50. I was expected to earn that money by doing a series of odd jobs around the house, mowing neighbors’ lawns, and shoveling snow. It took about 6 months to earn enough money to pay for it, but I did it.

When I was given my grandfather’s car after he could no longer drive it, I was expected to pay for my own gas, insurance, and maintenance. During the summertime when I was home from college, I was expected to contribute $25 a week toward paying the family expenses.

ELEMENTARY SCHOOL YEARS

By the time I entered the Putnam school as a child, after the “early intervention” provided by my parents and some speech therapy, my speech was beginning to return. I was reevaluated, and my diagnosis was upgraded from “psychosis” to “neurosis,” so things were looking up for me.

I was in a class with three other boys in what seemed like more of a play-based intervention, which was focused on developing social interaction rather than ABA. To me, the most important variable of that program in terms of its successful outcome was its intensity.

I saw psychotherapists once a week for about 10 years, beginning at age 5. Some were better than others. What I hated most about these sessions was when a doctor decided I should play with either play dough or puppets. Both of them smelled terrible, and the play dough also left a residue on my hands.

Dr Martin Miller is one therapist who particularly stands out in a positive sense. He was ahead of his time in that, rather than trying to analyze me in an attempt to “cure me” of my autism, he helped me deal with the issues that stemmed from my condition.

A Social and Academic Catastrophe

In elementary school, I was a social and academic catastrophe. I did not know how to interact with my classmates in a way they could understand or expect, which resulted in a lot of bullying and teasing. For example, I remember walking around in kindergarten, repeating the letter “B” over and over. Even though I thought it was an ugly sound, I was compelled to repeat it. Around that time I realized there was something different about me, as I was the only one I knew who went to a special clinic and saw a special doctor (the psychiatrist) every week.

Instead of talking with my classmates, I had a repertoire of sounds and actions that I would make at them. I actually hoped I would get them to repeat these sounds and actions back at me. For me, that was a more predictable type of interaction than attempting to enter into a conversation.

I Loved to Read Books about Special Interests

Academically, I was almost a grade behind in most subjects and was often surprised when I got promoted to the next grade. However, I still had my special interests, in areas such as astronomy, airplanes, electricity, natural history, weather, cats, music, and the like. I spent hours at my desk, reading stacks of books on my favorite subjects. One day in the 3rd grade, I was busy taking notes and copying diagrams from a stack of astronomy books on my desk during a math lesson. My teacher told me that I’d never learn how to do math. Yet somehow, I’ve learned enough math to teach statistics at the university level! The good news is that today, an educator would likely notice such a special interest and find a way to incorporate it into a child’s curriculum.

Sometimes I wondered if there was more to school than sitting at my desk, reading my favorite books. Often, just figuring out what teachers wanted was a perpetual challenge. Until I went to college, school always seemed like a bit of a game, as I tried to guess what the teachers wanted me to do. I think my teachers did not know how to reach me, and since I was not a behavioral problem, they just left me to my own devices. In those days, before there was special education law, it was probably for the best.

My Parents Supported My Special Interests

My parents supported my special interests. When I was focused on collecting seashells, my mother and I spent hours sorting and gluing shells onto a cover of a cardboard box. We also wrote the English and Latin names for the shells below them. When I was interested in astronomy, a telescope appeared, and we would stay up late at night, looking at the moon, stars, and constellations. My parents supported my interest in chemistry by providing me with a chemistry set and eventually a lab bench in my room.

I followed the Apollo space program closely and had a model of the lunar module at home. I read every book I could get my hands on that related to aviation, space exploration, and astronomy. At the time, I desperately wanted to fly on an airplane and thought about becoming a pilot. One of the highlights of my life was my first flight from Boston, MA, to Tampa, FL, to visit my grandparents. The feeling of takeoff was pure nirvana. Knowing what I know today about sensory integration, I was underresponsive in the vestibular and proprioceptive senses, and I was a sensory seeker. This may explain why I was and continue to be attracted to airplanes.

Some of my favorite sensory-seeking activities as a child were riding my bicycle into a snow bank as fast as possible to launch myself over the handlebars, climbing a tree about 20 feet in height and jumping to the ground, and swinging high on a swing set to find the perfect launching-off point, so I could sail through the air and land softly on my feet. To this day, I still enjoy take-offs on airplanes, as well as when the ride gets turbulent.

MIDDLE- AND HIGH-SCHOOL YEARS

In contrast to many, if not most people, middle and high school were better for me, probably for the following two reasons: (1) I started using words as my primary means of interaction with my classmates, instead of sound effects from the environment, and (2) I was able to engage in my special interests. The middle- and high-school years are when courses, clubs, and activities begin to form around particular interests. At first, I took a shop class in electronics and finished the material in about 3 weeks, when there were 9 more to go. However, the shop classes at my school contained bullies. My teacher saw that bullying was beginning to be a problem, so I was transferred into band.

In the band, I now had a structured activity in which to mediate my interactions with other students. Music was a place I could be successful and “geek out” with other like-minded students. My interest in music may have stemmed from the music my parents used for our home-based “early-intervention” program when I was young.

When I was 6 years old, my parents had found a teacher to give me music lessons. However, the lessons went badly. I think the most important thing I learned from these lessons was how not to teach children with autism how to play musical instruments. While I was taking those lessons, however, my parents remained very strict about having me practice 30 minutes a day to prepare for my time with the teacher.

I Learned to Play Most Musical Instruments

I became so taken with music that I would spend hours in the instrument closet with introductory music lesson books, such as A Tune a Day, to learn how to play most of the instruments. A leading factor in my choosing music education as an undergraduate college major was that one of the requirements was to learn all of the instruments!

How I Coped with Physical Education

Physical education was often problematic to me, owing to the challenges I had with motor control, and, later, bullying in the locker room. One day in middle school, I noticed a chart on the wall of the locker room that read “100-Mile Club,” with a bunch of names on it. I asked the gym teacher what it was, and he said that anyone who walked or ran around a track 100 times during the semester got their name on the board. I requested to use my gym period to work on that very task. Upon his agreement, I queried as to whether I could walk or run in my “civilian” clothes, to which he assented. This was great, because now there was no more dealing with locker-room bullies, and I didn’t have to engage in all of those ball-oriented sports I was so bad at. Rather, I could work on something that was a strength for me—running around a track.

In those days, there was no Individualized Education Program (IEP) and no special services for kids with autism. I was lucky to have a sensitive gym teacher who must have agreed I needed to get my physical education in an alternative way.

In high school, I had an opportunity to design an independent-study curriculum for myself in physical education. Bicycling was a special interest of mine, and I developed a weekly training schedule to prepare for long rides of 100 miles a day, as well as bicycle races.

I never had a problem with physical fitness, per se, but rather the social aspects and coordination needed to play team sports. Additionally, I had great difficulty with catching a ball because I always thought it was going to hit me, and I’d run away or duck. This was probably due to my visual perception issues.

Other enjoyable middle- and high-school activities included joining a rock-climbing club, where we went climbing with ropes and carabiners (a metal ring used to hold the ropes when climbing). I also convinced one of the teachers to sponsor the bicycle club I wanted to start, where I’d lead rides of up to 25 miles. It was great fun drawing up maps for the ride by hand, as there were no Google Maps at the time.

EXPERIENCES IN COLLEGE

As an undergraduate in college, rhetoric class was especially hard. It was essentially a freshman course to develop writing skills. Analyzing music from the romantic era posed a real challenge, as I found the forms to be less structured than compositions from other periods. I also found physics of music to be incredibly tedious. The subject interested me, but I found the teacher to be horribly boring—possibly owing to a lack of structure in the class. And, I was still afraid of doing math—statistics class was particularly daunting, until I took it as a summer course. The grade-school teacher who had told me I would never be able to learn math years before had succeeded in scaring me away from all math-oriented subjects. However, in college, when I decided to pursue an accounting degree in addition to my music degree, I faced the sizeable hurdle of required courses in mathematics.

With much trepidation, I took the first two required courses during the summer, when they would not interfere with my other coursework. Those courses went well. Emboldened, I started a statistics class that had the reputation of being incredibly difficult. That class was notoriously a good way to bring down your cumulative average, because poor grades were commonplace and it drained away study time from other coursework. After 2 weeks, I found this to be true, and I dropped the class.

Conquering the Dreaded Statistics Class

The following summer, I took the same statistics course again, all by itself, figuring it would be my lone “D” (and hopefully not an “F”), but at least it would not interfere with my other studies during the semester. To my surprise, my hard work, in combination with the support of an effective and helpful teacher, resulted in an “A!”

Doing well in that class made me realize the following: First, math was no longer to be feared—I could do well and even enjoy it! Second, I could use my newfound math abilities to make money by tutoring other students. And third, it became my impression that many people found statistics difficult because it was taught badly. Therefore, it became a personal goal of mine to teach statistics at the college level and do it well. That is how I came to teach statistics at various colleges as an adjunct professor, until 2008. Once I get tenure at Adelphi University, I may return to teaching statistics, in addition to courses in autism and special education.

In school, I remember struggling mightily to understand the concept of going from broad descriptions to honing in on a specific subject and then expanding upon that subject. This became pronounced when I was doing qualitative research as part of my graduate and doctoral work. It was only about halfway through a doctoral-level course in qualitative research, after drawing a funnel-shaped diagram, that I was able to grasp this concept more fully as I studied the way the broad end narrowed down to a more pointed tip. It would have been easier for me if my professor had included such a graphic in her lecture.

THE IMPORTANCE OF MENTORS

For me, mentors have played a valuable role throughout my school and teaching years. For instance, the orchestra conductor at my high school took a special interest in my musical curiosity and gave me free music lessons during his break time. When I was a professor of music in the Boston area, the dean of business became a mentor of mine. Although we did not share much in terms of common interests, he was very helpful in guiding me through the political maze that academic institutions can often be. Arnold Miller, the developer of the Miller Method, took a keen interest in my career, as well as in special education and autism. It was he who encouraged me to write my first book, Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, for which he wrote the foreword in the first edition. Dr Miller’s guidance was invaluable in getting me through my doctoral program at Boston University, right through my dissertation and beyond.

EMPLOYMENT

Working as a Youth

My first taste of work came at age 8, when I began shoveling my neighbors’ driveways after snowstorms. By middle school, I had teamed up with a friend, and the two of us had regular customers we shoveled for when needed. On a good day, we could make more than $50 each, which was a lot of money to a young kid in the late 1960s and early 1970s.

Toward the end of elementary school, I had a paper route, which I maintained through middle school. A paper route was a great thing for a child to have, because it contained all the aspects of a business enterprise at a small enough level for a young person to handle. Part of differentiating my service from other paperboys was placing the newspaper between the storm and main front doors of each house, so my customers could get their paper while remaining indoors—especially in bad weather. After a while, I had both a morning and afternoon route, with nearly 100 customers in all. Weekly collections for the papers got to be onerous, so I converted to a monthly system, where I collected customer payments a month in advance and reduced my time knocking on doors by 75%.

I Won a Trip to Disney World from My Paper Route

Sometimes there were contests, whereupon getting a certain number of “starts” (new customers), a paperboy could win a prize, such as a free trip to Disney World. A free trip to Disney World for finding only 20 new customers seemed like a great deal. After exhausting possibilities for new customers within my paper route territory, I reached out to other parts of my neighborhood and soon had almost twice the number of “starts” required. I gave some of my starts to a friend of mine, who was also a paperboy, and we went to Disney World together and had a great time. I also got my brother involved in the newspaper route, and he helped to deliver papers, as well. Currently, I know that newspaper delivery jobs for youth are becoming rare. However, possible employment substitutes that combine the need to do a job well on a regular basis and other aspects of running a business on a child-sized scale include dog walking, babysitting, and lawn care.

Bicycles had become a very strong interest for me at this time, so I began repairing bicycles at an hourly rate of a dollar above minimum wage. As described earlier, my parents insisted that if I wanted a “grown-up” bicycle, I would have to earn my own money to pay for it.

Working in a Restaurant Was Sensorially Overwhelming

My first “real” job was working as a busboy at a steakhouse when I was about 15 years old. This was a horrible job. Back then, it did not occur to me that autism had anything to do with the problems I faced. However, now I realize that the conditions of a noisy, busy restaurant were sensorially overwhelming, causing me to shut down and work slowly. The managers certainly did not like that. As a result, I realized that I needed to find a different job. However, I would not leave even a bad job before finding another one first. Fortunately, I saw situations like this one as learning experiences that drove me to find more suitable employment, rather than wallowing in self-pity and remaining in ill-fitting jobs. In this case, I decided to look for a position as a bicycle mechanic.

Being a bicycle mechanic was a dream job to me, since fixing, designing, and assembling bicycles was my passion. My interest and skill with bicycles got to a point where I was able to disassemble a bike down to the ball bearings and build it back up again. I also taught myself how to lace together a bicycle wheel from a hub, a collection of spokes, and a rim. This was a valued skill in a bicycle mechanic, and demonstrating that I could build a wheel got me at least one job.

Dorm-Room Bike Repair and Tutoring Business

To get a bicycle repair job, I would ride my custom-made bicycle to a bike shop and strike up a conversation with one of the mechanics or the manager himself. After talking with the manager, I would ask if he needed a mechanic. My bicycle was my portfolio. By having something concrete to talk about, instead of making small talk, I was able to gain the manager’s attention and get a job.

I was employed at a number of shops and eventually worked my way up to managing these shops. In my late teens and early 20s, my grandfather offered to help set me up with my own bicycle shop. However, I already had a sense of what was needed to run a successful shop, and I preferred to focus my energies on higher education.

Knowing what I know about autism and sensory issues, I realize now that fixing bicycles in the back of the shop allowed me to better regulate my interactions with others in a way that suited me. Additionally, my interactions with other shop employees and customers related to my special interest in bicycles.

I received my two undergraduate degrees in (a) music education and (b) accounting and information systems at the University of Massachusetts in Amherst. In looking for employment to raise money for tuition and other expenses, it made much more sense to use my bicycle repair skills rather than work in a minimum-wage work-study job in the noisy dining commons or in another position at the university.

My solution was to open my own bicycle shop…right in my dorm room. I set my repair prices at two-thirds what the local bicycle shop charged, and I plastered the campus with simple, hand-written signs photocopied onto orange Day-Glo card stock. Soon, I had a dozen or more bicycles to fix on any given Saturday. I could spend half a day repairing bicycles and make more than I would have during a week of employment in a work-study position.

My dorm room was perfect for bicycle repair. The cinderblock walls had a metal lip at the top for hanging pictures. I used that lip to hang a bicycle rack that was designed to be strapped to a car trunk. Then I placed a 4-foot length of wood across the “legs” of the bicycle rack and had a great shelf on which to place my tools while I worked.

One day, one of the bicyclists I hung around with at the university mentioned that there was a bicycle trade show in New York—bicycle nerd heaven! In finding out more about the trade show, I learned that only owners of bicycle shops were allowed to attend, as opposed to customers or interested people. As a result, I generated business cards and stationery and gave five of my friends “positions,” such as repair manager, sales manager, and chief mechanic. Properly credentialed, we piled into the car I got from my grandfather, drove to New York City, and got into the show.

All was well and good with repairing bicycles in my dorm room, and at least I didn’t think my roommate had a problem with all the bicycles I kept in our room. However, my older (wiser) sister thought differently and made me promise to have no more than one bicycle on my side of the room at a time.

I found that tutoring was another good way to make money in college. After learning that I could do well in statistics, I decided to help other students who had difficulty in this area. I tutored in other subjects, as well, including accounting, computers, and music theory. Because I was an accounting major and had an interest in taxes, I began doing simple tax returns in undergraduate school.

After graduating with my bachelor degrees, I interviewed for jobs in accounting firms without success. Finally, the school career counselor referred me to an outside placement consultant, who found me a position in a medium-sized accounting firm where they audited mutual funds. Since I had an interest in mutual funds, this seemed to be a good idea.

A Sensory Nightmare at an Accounting Firm

Getting to work on the first day was a sensory nightmare. Again, this came at a time when I knew nothing about how autism affected me in any way. It took getting up at 5:15 in the morning to arrive at work on time at 8 o’clock. Returning home meant reversing the process and having dinner at about 8 or 9 in the evening. This was way too much travel time.

The second day on the job, I neatly folded up my suit (which was another sensory violation with the binding jacket and tie), rode my bicycle, and got to work in less than 45 minutes! Within days, I had arranged with the superintendent of the building to store my bicycle. I kept a selection of business clothes in the basement, where I changed into appropriate work attire before taking the elevator up to the office.

Shortly thereafter, the personnel director pulled me aside and indicated that I was seen entering the building without a suit and that it would be better if I took public transportation. I also had difficulties blending in with the other accountants.

After 3 months, I was let go from that position. The director of personnel said, “Perhaps you have a disability you have not disclosed. It’s just not working out.” It never occurred to me at that point that difficulties I’d had with autism as a child played any role.

Within another 3 months, I found another job at a bank, working as a portfolio accountant. Because the organization was so large (with 5,000 employees), I could ride my bicycle to the far end of the office building, do my Superman routine to change into business clothes, and walk across the expansive building to my desk without anyone being the wiser.

Although I performed my job in a satisfactory way, I still did not seem to fit in with the people working there, and I soon grew bored of the routine. I managed to locate a position at a vocational school, teaching computers, mathematics, and other business-related courses, before leaving my job at the bank.

I Like Teaching

I found that teaching worked well for me. My colleagues were intrigued that I rode my bicycle to work and didn’t see it as a negative at all. About a year into that job, I realized that I preferred to teach music rather than business, so I negotiated my hours down by a third and started working toward a master’s in music education at Boston University.

The vocational school shut down after about a year, and I began teaching as an adjunct faculty member in several colleges and universities in the Boston area. At first, I taught business and computer classes, and then music. I even taught classes in both accounting and music at Boston University while I worked on my master’s and doctoral degrees. I began a doctorate in music education but switched to special education instead.

Academically, I thrived. Most of the work I did to support myself came from teaching adjunct courses. I even managed to get a full-time teaching position at a secretarial finishing school, and then later as a professor of music at a community college in Boston.

Unfortunately I lost that job, most likely because of a failure on my part to pay careful attention to office politics. When I started the position, I proposed a restructuring of the course offerings in the music department. While I had the support of my dean, I neglected to get an official “OK” from a long-term faculty member from another department, who taught a single course in the music program. From that point forward, he was always at the ready to oppose future proposals of mine and eventually convinced the school to close the music department.

RELATIONSHIPS

Making Friends

As a young child, making friends in elementary school was difficult. Sometimes I had one or two friends, but the school seemed mostly full of bullies. Sometimes I’d make friends with someone who seemed different than the other students. Additionally, the friends I had were all older—they were either my sister’s friends or adults. Thinking back, they may not have really been true friends, but since they were nice to me and listened to what I had to say, I considered them friends.

As a teenager, again I was friends with older people. I still had very little in common with my classmates, and there was some bullying, but less so than in elementary school.

Finding Friends with Common Interests

In college, I built more friendships with my peers. This is probably because classmates seemed more interested in who a person was, rather than how much they were like someone else. Also, since my school had 25,000 students, it was much easier to find people with common interests. For example, if I wanted to ride my bicycle at midnight, I could find someone just as strange as I was to ride with me.

In my first adult job as an accountant, I had no friends there. I did make some friends at the job that followed, at the bank. However, all of my friends were from other countries, such as India, Eritrea, and China.

Even now, I find that most of my friends are from other countries. My theory on this is that people of a given culture intimately know how another person from their culture is supposed to behave. Deviances from these behaviors are disliked. In grade school, these differences are met with teasing and bullying. In the adult world, the more likely outcome is being shunned. Additionally, people in other cultures don’t pick up on differences as much, owing to their relative lack of familiarity with your own culture. Differences that they do notice may be misattributed to your culture instead of your individuality. I have also found that people in other cultures have their own challenges with integration and may be more tolerant or even appreciative of differences in others. This may explain in part why I married a Chinese woman. I still feel more comfortable with people of different ages and cultures than my own.

Dating was always confusing to me. There was too much nonverbal communication and hidden curriculum. There were times when someone told me that a woman was interested in me, but I never picked up on the signs. I just considered myself hopelessly clueless in this arena.

In undergraduate school, after spending a lot of time with a particular woman, she suddenly told me that she really liked hugs and backrubs. My interpretation of that was, “Great! I have a new friend, and not only that, but now I can get the deep-pressure hugs I’ve always craved!” However, she evidently had a very different idea of what our relationship was, and after a lot of conversation, I realized that in addition to wanting to be my girlfriend, she thought she had been dating me for a month! Because the feeling was not mutual, the encounter does not qualify as a dating experience or having an intimate relationship. It goes beyond the typical male cluelessness that is often espoused to my gender.

What this experience did do was inform me that there was a “secret channel” of communication, consisting of eye and body movements and postures, which led me to spend hours in bookstores, reading up on body language and nonverbal communication in general. I got so interested in this subject that I even did a paper on nonverbal communication for a psychology class.

Doing Homework Together Morphed into Marriage

In total, I’ve had three intimate relationships in my life—all of which resulted from a woman making it clear to me that she wanted to date. In the case of my wife, our relationship eventually turned into a romantic one, but it may not have, had she had not made her sentiments clear. After playing the harp for 9 years in the Beijing Symphony, she arrived in the United States from China to further her education. She had been in the U.S. for about 18 months when we met as graduate students in a music class. Reviewing each other’s homework morphed into doing things socially. Then, one day at a beach, she suddenly gave me a big hug and kiss, and she held my hand. On the basis of my readings, this made me realize that she probably wanted to be my girlfriend. We have now been married for more than 21 years.

Forming platonic relationships or simple friendships with the opposite sex is not too difficult for me. However, forming an intimate relationship with a person of the opposite sex was always very difficult or impossible for me to initiate. I was just lucky that the three women I dated (especially my wife) made their intentions so clear that their wishes could not be misunderstood. Without these women making their intentions known, I would likely remain single to this day.

ROLE MODELS

My grandfather was the smartest person I knew and had great mechanical abilities. Initially very poor, he educated himself, became a lawyer, had his own business selling plastic shades all over the world, and could plan and build a house from the ground up. He had little tolerance for stupidity and changes in routine, even as simple as dinner being 10 minutes late. Thinking back, he probably had some Asperger’s tendencies.

As I moved into high school, Bernard Thévenet, two-time winner of the Tour de France bicycle race, became a role model of mine. I had a big poster of him in my bedroom, and I wanted to be like him. Tullio Campagnolo was an Italian bicycle racing component maker. I didn’t want to become Tullio. However, I thought Campagnolo bicycle components were just the most beautiful and functional components that could ever be made for a bicycle.

I always admired musical composers, such as Tschaikovsky, Beethoven, Mozart, Berlioz, Mahler, Richard Strauss, Schubert, and Stravinsky. I didn’t want to be like them, but I was inspired by their music and wanted to compose like they did. I spent a lot of time burrowing into musical scores and rearranging the instrumentation for different ensembles. I thought the most honorable thing one could do was to become a music major at a conservatory or university—which I eventually did.

During my graduate work, a music history professor by the name of Joel Sheveloff impressed me. He had immense knowledge of both music history and theory, and his history courses often seemed to be taught through a music theory lens. He is just a good, all-around ethical and moral person.

Last but not least, I received much support from Arnold Miller, who developed the “Miller Method,” a cognitive–developmental systems approach for working with children on the autism spectrum. From my initial observations, it seemed like what he was doing with autistic children was…right. Later on, I found that one important aspect of his developmental-cognitive approach focuses on determining how a child with autism perceives his environment. In other words, figuring out how people with autism think. Arnold was very helpful and instrumental to me throughout my doctoral study in special education and remains so to this day.

ON AUTISM

My Autism Is Never “All Done”

One life-changing event for me was when I realized that my autism was not something of the past. What I mean by that is, by the time I got out of grade school and finished my sessions with the psychiatrists, I thought autism was “all done.” In fact, up until my mid-30s, had someone asked if I was or am autistic, I would have said, “Well, that’s something of the past, when I was a young child…but not anymore.”

It was not until I experienced difficulties with some relatively unstructured information on a doctoral qualifier examination that it occurred to me that this “autism” diagnosis of the past was “haunting” me now, in this very subtle but perhaps very significant way. I underwent a neuropsychological examination and found out that the childhood diagnosis and condition were indeed still with me. However, with intervention, maturation, and intense curiosity about the way things work, I was able to work around most of the challenges. I did receive some suggestions for mild accommodations to enable me to take the doctoral qualifier examination, but the school refused to make them. Rather than spending a lot of time with lawyers and a potential court hearing, I decided it best to refocus my doctoral studies on special education and the autism spectrum. However, I never thought of autism as being an excuse not to do something. Rather, understanding the characteristics of the condition as they affect me serve as a guide to help me do things better.

Leading a Fulfilling Life

From my initial presentation on autism in 1997 to my first book, Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, it has been my goal to combine academic, professional, and personal experiences on the autism spectrum, instead of touting the experience of “being autistic.” In other words, how can I employ my autistic characteristics—just as anyone on or off the spectrum should do with their own traits—to lead a fulfilling and productive life and help others realize they can do the same?

I like to think of Beyond the Wall as employing an autobiographical structure in which to address the issues of education, accommodations, sensory issues, and a successful transition to adulthood in the areas of self-advocacy, relationships, continuing education, employment, and, in short, having a real life, working and doing things just like everyone else. One can be autistic rather than living a life of autism.

Rather than attempting to make a career of talking about autism at conferences, I do the following. First, I serve as a professor of special education, developing and teaching a number of courses on a variety of subjects. Second, I write books about autism. The goal behind my books is to provide practical information about supporting individuals with autism in meeting and overcoming challenges. The same holds true for articles I write and for when I consult and do workshops and presentations about it. And third, I teach music lessons to children with autism. Engaging children in music therapy has many benefits. It provides them with an important avenue for developing interactions with others, as a musician and in the community (such as being a member of a local ensemble). Plus, music is just plain old fun, and fun is always a worthwhile pursuit.

I believe I have made a career in autism and special education on the basis of hard work and conducting research in the field, combined with my own experiences of being on the autism spectrum. This is in contrast to what I see some people doing when they want to make a career out of being autistic. It may be a subtle distinction, but I think an important one to emphasize.