Monday, May 13, 2013

'The soundtrack of my life'

By Jason Nolan

I have always made sense of the world through sound and music, so it's not strange that the music of my child and teen years, the late-70s and early-80s, had such an impact on me. I’m also autistic, and have a strange obsession with words. Sound, music and words are a part of my echolalia—the automatic repeating of what I hear and read—that have become important placeholders for my thinking.

My music is probably not your music and my music was largely angry music. What I remember is a time of anarchy in the UK: not that of the Sex Pistols, but rather well thought-out social protest. A quartet of songs come to mind that influenced my thinking on social justice decades before I located myself as someone seen as ‘other’ or different in a manner reflecting these voices.

Tom Robinson’s twin anthems “Sing if you’re glad to be gay” (1977) and “Power in the Darkness” (1978), and Ian Dury’s “Spasticus Autisticus”(1981) are obvious statements about racism, homophobia and ableism. Although I was neither gay, a visible minority nor (as I thought at the time) disabled, these songs spoke to me in their rage against intolerance. The Only One’s “Another Girl, Another Planet” (1978) was an unrepentant challenge to the social norms proscribing self-medication and drug addiction, as well as a statement about feeling like being from another planet. Incidentally, this song plays through the opening credits of the comedy Paul (2011), a movie about an alien trying to get home.

I chose these songs because they all popped into my head this morning, one after another. But there is always a logic to my seeming randomness. I was thinking of a title for this piece and I thought of translating “Autistic Professor” into Latin: something like “Professorius Autisticus.” But I thought it sounded too much like “Spasticus Autisticus.” And as the train of thought left the station, I was overwhelmed by the associations of the music and mood of British pub rock from which the music sprung. In a few moments I’d worked out all these songs, and had to get up to write it down. It was 5 a.m.

My sounds and my music rotate at high speed around the central core of me. It is not anyone else’s music, just my way of ordering and making sense of the world. Take it away from me and you will see a catastrophic meltdown. But you can’t take it away from me. The words and sounds echo in my head whenever I need to flush out the crass sounds of the world of typical folk. Conversations, trucks reversing, air conditioners, fluorescent lights’ 60Hz hum, that strange 13kHz reverberation of the tinnitus that follows me wherever I go all bleed into nothingness when the songs and sounds I like take prominence. Call these my auditory stim, even though the sounds may be swirling only in my head; I’ve long since been socialized out of making strange vocal utterances.

Luckily for me, I was a latch-key child. When I grew up there was no MTV, Disney Channel or CDs, and little of the mass-marketed musical commodifications that today overwhelm children and deaden their senses. But neither was I overwhelmed with prescribed parental culture. My parents had few records I remember. I only remember Festival of Light Classical Music (Reader’s Digest), A Taste of Honey (Herb Alpert), Living in the Past (Jethro Tull) and Beyond the Fringe (Peter Cook and Dudley Moore). Most importantly, however, I was never institutionalized in daycare, and subject to a standardized regimen of age- or developmentally-appropriate music. Jethro Tull’s counterpunctual Bourée, and Liszt's Hungarian Rhapsody, are the two songs I remember transporting me the farthest. I would get my stim as I hummed along and conducted in time with the music.

Largely left to my own, and living on my own, on and off since I was 17, I have been free to form my own acoustic palette of sounds and words that interest me, soothe me and help me to organize my thinking. They are not sounds and words that others might choose, but as always with me, they spring forth fully formed from my lips or fingertips, or merely float about in my mind. I do not plan what I am going to do or say, and each word written here has been laid down one after another without reflection or compositional intention. Most importantly, they have not been prompted, directed, demanded or cajoled by anyone according to anyone’s notion of what should go where, beyond the general influence of having read too many books and having finally figured out how to construct sentences and paragraphs.

My words, like my music, like my movements, choices of clothing, tastes, curiosities, interests, desires and passions are, to me, intrinsically situated in myself, and are the foundation of my motivations. To take them away from me is to remove me from myself, and there is nothing left.

As I sit here, age 50, as a professor and director of the Experiential Design and Gaming Environments Lab at Ryerson University, I don’t have to wonder how I got here. I got here because I fell through the cracks somehow, and was largely left to my own devices. Without heteronomous (that is invasive or helicopter) parenting, institutionalizing influences or the normalizing of commercialized children’s culture, I have survived largely intact. My therapeutic interventions followed the social rather than medical model. I was shown how to engage with others when I wanted to, and the normalizing expectations that were as onerous as any Acquired Behaviour Analysis (ABA) session were directed at enabling me to accomplish basic tasks and social interactions. However, there was so much room for me and my interests that both escaped below the radar or were allowed to roam unchecked, perhaps because they were not so outlandish. Or perhaps because, by having such outlets and freedom, I was not so over-stressed as to feel the need for a more dynamic mode of expression.

Left on my own, I was a happy child. When I was forced to engage I was not. Yet I did like being around people when I was able to choose, and I was always interested in knowing how to engage with others when I was the one choosing when. John Locke said that we should keep children healthy and safe from harm and from harming others, but otherwise give them no parental interference whatsoever, neither direction, admonition or even toys. They should be left on their own without adult influence until they so choose to come to us. They will come with their own intrinsic interests and motivations, their own goals and aspirations, their own sense of self. For, as he put it, there is nothing so sad as an adult who does not know what drives his or her own passions.

We live in a world where few have the chance to ever learn what really drives their passions. We live in a world that does not provide equitable support and opportunity for those of us with non-standard and inconvenient special needs. We live in a world that lacks respect or understanding for diverse ways of thinking and living. We live with parents who want the best for us, but are often lead to believe that the relative anonymity of neurotypical and institutional norms—trying to fit in and act normal in school, social situations and the workplace—are the only path worth following.

If our goals, and the goals we have for the children in our care, is to help them to be all they can be, then it is incumbent on us all to ensure that we are doing everything we can to nurture every scrap of intrinsic interest in ourselves and all children, in the face of institutionalized norms and standardizing influences.

I fell through the cracks, and luckily not much attention was given to try and fix me. And what was tried, didn’t work very well. Yes, I dropped out of high school and worked a string of dead-end jobs, then returned to high school when I found an inclusive learning environment that helped me find my interests and strengths. I wandered through a liberal arts education, slowly learning how to communicate properly with others through the pages of stories of how others engaged. After a dozen years fumbling through school and jobs and even some teaching, I realized that I wanted to learn about learning.

Another dozen years later I got my first full-time job, at age 43. And I sit in my lab, with grad students working on various projects, while the soundtrack of my life plays on the speakers at my desk, perhaps bothering others somewhat. But I know it is the sea in which I swim. Brian Eno’s “Another Green World” or Hawkwind’s “Quark, Strangeness and Charm” can be heard day in, day out. These sounds are my stim. And it is this stim that makes the world possible.


What a beautiful post about a fascinating person. What I loved is his eloquent description of the benefits of being left alone as a child. Fascinating! Especially the fact that he was happy 'being able to choose' when to be social and with whom. I would love to ask his parents, "Did you worry? Did you worry every day?" It was a different world when Jason was small. Thank you for a very thought provoking post, Louise!

"there is nothing so sad as an adult who does not know what drives his or her own passions."
such an amazing read!
Thanks Jason & Louise