Have You Tried Not Being on the Spectrum?
Even at 2, I didn't know how to smile for a camera--unlike my 6-month-old little brother.
If the concept of an "autism spectrum" had existed in 1961, I would've been tagged with it then.
Wait a minute--weren't you born in 1961?
Why yes, I was. And from the beginning, I was different.
To be clear, there are plenty of baby pictures of me smiling, even laughing. Although first-born child photography of the 1960s was limited by the cost of buying and processing film, there are still plenty of stills, slides, and even some 8mm movies of my tender years. It's what young parents do. And there are occasional candid smiles coming from my little face. In posed pictures, though, from the moment I became aware that cameras existed, my teeth stopped showing. The corners of my mouth might turn up a bit, but that was it.
More significant were the silent tears. When I was hurt, frustrated, angry, sad, I wouldn't wail. Tears would roll down my cheeks, but that was it.
Many of the early signs of my deviation from the norm could be descriptors for other human conditions: musical and literary precocity, shyness, introversion, habits, obsessive hobbies, traits manifested by large portions of the population at one time or another. It's the sum total that would give a modern pediatrician or school psychologist cause for concern.
There were ample benefits: high grades, early literacy, creativity, keeping out of trouble. I wrote two science fiction novels in high school, became an Eagle Scout, and graduated at the top of my class.
Balancing those benefits, though, were some painful, scarring experiences that might have been mitigated with an early diagnosis. I was frequently bullied, and my response was typically to retreat behind my stoic mask, a ploy that had the effect of intensifying the torment. I had few friends growing up, none that I kept in touch with once I left town (which, as the son of a Methodist minister, happened every three years). Some of my less hygienic habits made me even more of a social outcast. My academic skills were downplayed by teachers and administrators socially conditioned to reward extraverts and natural leaders. I was lonely much of the time: despite appearing to be an introvert, I actually craved relationships with my peers, and grieved my inability to spend time with friends outside of school hours. Most of all, people just didn't understand me. I once overheard my grandfather complain to my parents, after hosting me for a week, that he couldn't get a word out of me.
All of these issues carried over into young adulthood, with an additional disadvantage: much of what made me shine as a student, an artist, a Scout stopped being extraordinary once I left the small town culture I had grown up in. Willamette may have been a small college, but its selective admissions process guaranteed I would no longer be the only big fish in the pond. I still found ways to use the talents my condition gifted me with: my music history professor thought I should pursue an academic career rather than music education, and my band director agreed, but the last thing I wanted was to be a professor who reveled in esoterica. I wanted to be like my own high school band director, a teacher whose passion for music was infectious, whose empathy for the music nerds he taught was tangible and helped them through the personal turmoil of adolescence. But I lacked the touch: my stoic affect kept people from seeing me as accessible, and my application to be a resident assistant my senior year was turned down, just as I found myself losing every student body election I ever ran in.
As a graduate assistant at the University of Illinois, then an applicant for teaching jobs, I found again and again that, no matter how good I looked on paper, no matter how impressive my scores on standardized tests, the face-to-face experience of me was underwhelming. I interviewed for nine jobs in the summer of 1984; the one I finally got I lucked into because the first choice applicant turned them down. Unable to connect with my principal, I lost that job after ten weeks. I finished out the year as a substitute teacher, and retreated back into academia, going to seminary where again I shone as a student, but failed to impress as a student pastor. I compensated for my struggles with the social side of the work by learning how to preach extemporaneously, developing a delivery that was more storytelling than proclamation. All through my years of ministry, I heard that I was a different person in the pulpit than I was in the fellowship hall, with the clear implication that it was the latter that really mattered.
Despite that hindrance, my experience in ministry was that parishioners who spent the time getting to know me came around in the end, seeing through the affect to the sensitivity and compassion within. But not all of them did, and some began to complain that they just didn't feel a connection with me. Administrators picked up on this, and the nine years I spent as a pastor in my home conference established a pattern that carried over into my work in education.
It's a pattern I railed against, though I didn't understand it well enough to verbalize my frustration: people wanted me to be something other than what I was. They wanted me to be more "outgoing," less "backward," to reach out to them in ways that made them feel I was their intimate friend rather than a helping professional doing his job. It was easy to compare myself to successful pastors and know exactly what I was missing. I remember a Bishop visiting my church and watching him work the room; the word that popped into my head to describe him was "Clintonian" (Bill, not, sadly, Hillary), and I was both attracted and repelled by his smooth, friendly approach. I bought some self-help books and tried learning techniques for relating to people, but for the most part, it felt like and, I'm sure, looked like an act. This wasn't really me. The superficial parts of it didn't come naturally enough for me to use them with any sincerity. The parts that I did adopt--active listening in particular--made sense to me because I could see results when I used them. The rest I decided were simply not for me: if people were going to get to know me, it had to be the real me, not some sales pitch I used to rope them in first.
This is why I prefer teaching young children to teenagers: when I'm fully engaged in a lesson, the real me is fully present, and it's fine with my students. The dominant extraverted culture has not yet taught them to be suspicious of people like me; in fact, they have them for classmates and learn and play alongside and with them all day long. They don't just accept me, in fact: they love me. They don't read my calm voice and face as being judgmental or angry, they don't project disinterest on me, and they're open to what I have to share. Most importantly, they sense how much I care about them, and they return it with their affection and enthusiasm.
That's not how it is with most other teachers, parents, and administrators, though. I've heard the same things from principals I used to hear from church administrators: "We want to see you reaching out, having conversations, expressing an interest, talking with other teachers at lunch time." This has nothing to do with communication. It's about building relationships with new people--and teaching a subject that is the first to be cut when the budget comes up short, I'm changing districts as often as my father changed churches, so there are always new people.
Again, this is not a problem with new children. One or two lessons into the year, and they're hooked.
Which brings me to the equity issue at the heart of this essay. I did not choose to be the way I am. If I could change myself to someone who has more friends, who people feel drawn to, who always has someone to talk to, never has to feel lonely, I would. I've tried many times to make that happen. I've picked up skills, and I'm much better at it that I used to be, but it's always work, sometimes very hard work. And there's always a voice in me saying I shouldn't have to. I should be evaluated on the work I do, not the way I come across to people who are not my clients. The children I teach learn to be musicians and, more importantly (to me, at least), to love hearing and making music more than they did before they met me. Their parents are blown away by how confidently and enthusiastically they perform in their concerts, which leave both parents and children eager for more such experiences. By these measures, I'm a highly successful music educator.
These aren't, however, the only measures in place. In the domain of professional relationships, my silence at meetings and in the staff room are assessed as subpar. In communicating with teachers and parents, I'm considered blunt. And pre-adolescent bullies, sensing the commonalities between me and the autistic children who would be their favorite victims, but for the safeguards now in place that didn't exist in my childhood, single me out for concerted and even coordinated disruption. That puts me on the radar of administrators, targeting me for heightened scrutiny, and once again, I'm looking for work.
Before you raise the point: I will not argue that I need better tools for managing highly disruptive students. Everyone in my building needs such tools. Some are better at it than others. I'm better at it than I was when I came to this job, better than I was just a few months ago, but I've still got room to grow.
What infuriates me is the ways in which a part of myself that the world views as a disability has been used throughout my life to pigeonhole me, to eliminate me from consideration for work I excel at, and to limit my access to relationships with people who, if they spent just a few minutes one-on-one with me, would find my company interesting and rewarding.
Remember: I don't choose to be this way. It's who I am, who I've always been, and no amount of charm school, toastmasters, or self help will change that. It comes with skills that many find valuable and impressive.
As things were looking bleak in my current job, I looked into the possibility of getting protected status under the Americans with Disabilities Act, and found that there have been cases of people with autism forcing their employers to accommodate their differences. Getting that status, though, would take a court battle, and before I could even have that, I'd need a diagnosis. As I pointed out in my last post, my insurance company has refused to pay for the expensive evaluation that would make that possible, and even if I got it, it's too late in the game for that to save my job. I could be a test case, a poster child, and fight it out over the course of however many years it would take, but that's not how I want to spend the last few years of my career.
I have a gift. I've enhanced it with training and experience. I want to share it. I want to make the world a better place by helping children learn about and love music. I'm very good at it. In a just world, that would be all that's necessary.
I know, I know: if it were a just world, Al Gore would've been President, climate change would've been arrested years ago, the borders would be open, unicorns and rainbows and butterflies and hippies would all be drinking Coca-Cola on a hillside while they taught the world to sing in perfect harmony. This is the world we've got, and I'm going to have to spend the next few months playing the same old game of convincing strangers my stoic exterior is just a facade, that what's underneath is a gifted and compassionate artist and educator who they're fortunate to have the opportunity to hire.
It's still nice to dream, though, of that world in which people like me are valued for what we have to offer, rather than judged for who we're not.