Since the emergence of autism as a diagnosed condition in the 1940s, the oft-noted musical proclivities of people on the autism spectrum have generated much interest. Reports of savant-like abilities, extraordinary feats of musical memory, and disproportionately high rates of perfect pitch abound, along with a high degree of emphasis on music’s importance in therapeutic interventions.
With all this attention on the autism-music nexus, there has been surprisingly little on what autistic people themselves have to say about how they make and experience music, and why it matters to them that they do. In the below excerpts from Speaking for Ourselves, we hear from several musically engaged autistic individuals featured in the book, learning directly from them about the joys and challenges of living with autism, living with music, and living life in general.
“Autism isn’t cholera; it isn’t some disease you can just cure… And there is no cure. There really isn’t. It’s just there, wound into your personality.”
— Mara Chasar, student and fiction writer
“An excellent way to understand us is to really listen to what we have to say.”
— Elizabeth J. “Ibby” Grace, professor of education, vocalist, and autistic rights advocate, in Typed Words, Loud Voices
“The way I act, react, understand, and stand in the world is because I am Autistic. Autism cannot be separated from me and is part of every aspect of my life… The fact that I don’t speak makes me listen better, I guess… I was listening to some [hard rock] and I kind of liked it. I was listening to the lyrics at first but then it was like seeing a ball of light, spinning, then melting into drops of light. In some loud moments I could see some notes, like, jumping behind the ‘noise.’”
— Amy Sequenzia, widely published author, blogger, and autistic rights advocate
“I found ensemble performance to be a welcome refuge from the interpersonal entanglements I had to endure in the outside world. The music did not laugh, or judge, or make nasty comments, or quizzical facial expressions and gestures at the sight of some unexpected behavioral tendencies, among other things. For these reasons, I will always love it.”
— Donald Rindale, attorney, former trombonist, and former musicology graduate student
“When I put the music on I get a creative spark-type thing, ‘cause usually it’s hard for me to think, and when I get that creative spark I honestly can’t tell you what comes through my head, but I feel I’m able to take the song and in a sense manipulate it and put it into words.”
— Addison Silar, student and science fiction writer
“The pianist in me and the person in me are two different types. The pianist in me is someone that does [things] almost immediately and instinctively (and quickly); the person is not always as nimble as at the keyboard. That’s the main difference.”
— Dotan Nitzberg, concert pianist
“I’ve been fired from, or have left, more bands than I can count… So often, as with a great blues band I was playing with, I’ll be hired very enthusiastically, and then one day (or so it seems to me), all of a sudden, I’m a piece of shit and I’m out of the band. I have no idea why, except that it’s just the way it goes when you’re wired all funny.”
— Gordon Peterson, freelance musician and early music specialist; former music professor
“A major ‘issue’ (or part) of what having Asperger’s is like for me [is that] I am pulled in these two different directions. My modes of being can fluctuate between… having control and experiencing freedom, but I have a hard time (as with any polar opposites) hovering in the middle between them without gravitating toward one extreme or the other at any given time.”
— Maureen Pytlik, clarinetist and mathematician
“I would like to express to the rest of the world, that you judge me for who I am as a person not based on what I am. Autism is a part of who I am but I do not allow for it to define me. In conclusion, as you meet us you will find we are just as diverse and different from one to the next [as other people are]. We all have our own life stories. All we ask for is simply to be treated with the same respect as we would be [if we were not autistic] when it comes to interacting with society in general.”
— Graeme Gibson, world music instrument collector and online instrument museum curator
“You don’t get to tell me who and what I am. I do.”
Featured image credit: Lyrics by allisonmseward12. CC BY-2.0 via Flickr.
This is ground breaking research on autism and the way the brain is wired. Thank you Dr.Bakan for your insights.