Being Applied in the Ethnomusicology of Autism
Abstract and Keywords
The purposes of this chapter are, first, to describe and critically examine how an ethnomusicology of autism might be conceptualized as a form of applied ethnomusicology and, second, to position this emergent area of inquiry in relation to relevant epistemological frameworks, including the autistic self-advocacy and neurodiversity movements, disability studies, and the anthropology of autism. To achieve these purposes, the author employs a polyvocal narrative approach, weaving together his words and ideas with those of children on the autism spectrum with whom he plays music, spokespersons from within the autistic self-advocacy movement, and scholars, scientists, and disability rights advocates representing diverse positions and epistemic communities. The chapter proposes an ethnographic model of disability as a potential alternative and complement to existing social and medical models, arguing in turn that the ethnographic and relativistic tenets of applied ethnomusicology hold the potential to effectively promote neurodiversity and autism acceptance.
Applied ethnomusicology, writes Jeff Todd Titon, may be defined as “the process of putting ethnomusicological research to practical use” (Titon, 2011).1 My purposes in this chapter are, first, to describe and critically examine how an ethnomusicology of autism might be conceptualized as a form of applied ethnomusicology so defined, and, second, to position this emergent area of inquiry in relation to relevant epistemological frameworks, including the autistic self-advocacy and neurodiversity movements, disability studies, and the anthropology of autism.
To achieve these purposes, I employ a polyvocal narrative approach, weaving together my own words and ideas with those of children on the autism spectrum with whom I play music, spokespersons from within the autistic self-advocacy movement, and scholars, scientists, and disability rights advocates representing diverse positions and epistemic communities (Harrison, 2012). I ultimately propose an ethnographic model of disability as a potential alternative and complement to the existing social and medical models, arguing that the ethnographic and relativistic tenets of applied ethnomusicology hold the potential to effectively promote neurodiversity and autism acceptance by helping to transform customary tropes of deficit, disorder, despair, and hopelessness into alternate visions of wholeness, ability, diversity, and possibility.
The Artism Ensemble will be my principal ethnomusicological focus. Artism is a neurodiverse music performance collective comprising several children with autism spectrum diagnoses2 and their co-participating parents, along with a cohort of professional musicians and ethnomusicologists of diverse musicultural background. The ensemble is the cornerstone of the Artism Music Project, an Institutional Review Board-approved (p. 279) applied ethnomusicology program that has been developed in accordance with all permissions, safety, and ethical requirements and recommendations of the Human Subjects Committee at Florida State University (FSU). I have coordinated and performed with the ensemble since its founding in 2011.
In our collective commitment to fostering a musicultural world that builds foundationally from the agency, imagination, and preferences of the children in the group,3 Artism endeavors to privilege autistic ability over disability, supportively responding to the creative initiatives and impulses of children with autism, rather than trying to restrain, retrain, or redirect them.4 Artism additionally serves as a social model in its own right through its concerts and other performance events: a model of inclusive sociality, music making, and cultural co-production that promotes autism acceptance rather than autism awareness; that displays a productive and creative domain of musical praxis built upon the elimination of conventional generational, cultural, musical, and neurophysiological boundaries and barriers; and that in turn challenges traditional assumptions about musical expertise, musical value, and the ostensibly self-evident social hierarchies that exist within group music-making environments.
Artism applies ethnomusicology to practical use in these multiple and interrelated ways. It enables people who have historically been disenabled, builds culture and community in environments where “conventional logic” would seem to deny the very possibility, and publicly performs autistic ability and sociocultural inclusivity as challenges and alternatives to autistic disability and exclusion. Yet it is undeniable that Artism, whatever its merits or aspirations may be, is also a product of the very hegemonic constructs that it resists and challenges. It highlights the staging of autism and the performance of disability. In so doing, it paradoxically resists and is co-opted by an essentially (and essentialist) pathologizing view which posits “autism” in contradistinction to “normal,” thus propagating the very constructs of exclusion and hierarchy it aims to overturn, at least in some measure.
Like most manifestations of disability practice and discourse, the Artism Ensemble occupies a complexly contested space in which empowerment and appropriation are dialectically entwined; it invites critical consideration and evaluation. The following discussion endeavors to tease out some of this complexity, while ultimately concluding with the suggestion that Artism and like-oriented applied ethnomusicology projects are worth the effort, despite their inherent limitations and liabilities.
Applied Ethnomusicology, Music Therapy, and Medical Ethnomusicology
It is important to establish at the outset that there are fundamental epistemological and practical differences between engaging musically with autistic individuals in the context (p. 280) of an applied ethnomusicology project like Artism, on the one hand, and treating autism spectrum disorders (ASD) through the use of music therapy–based interventions, on the other. As is explained in the 2012 online article “Music Therapy as a Treatment Modality for Autism Spectrum Disorders,” published by the American Music Therapy Association (AMTA) on its website,
Music Therapy is the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program… . Music therapy provides a unique variety of music experiences in an intentional and developmentally appropriate manner to effect changes in behavior and facilitate development of skills… . Music therapy can stimulate individuals [with ASD] to reduce negative and/or self-stimulatory responses and increase participation in more appropriate and socially acceptable ways… . Because music is processed in both hemispheres of the brain, it can stimulate cognitive functioning and may be used for remediation of some speech/language skills [in persons with ASD].
The field of music therapy is highly diverse. The approaches of its researchers and practitioners span a wide gamut, from behaviorism-based studies yielding quantified outcomes to ethnographic and phenomenological methods emphasizing qualitative findings and narrative reports.5 Yet for all the ways in which they differ, and despite the fact that the cited AMTA article is by no means representative of the discipline in total, I would contend that there is a unifying thread binding together the endeavors of music therapists on the whole: put simply, they are committed to using music for therapeutic purposes, and therapy, by at least one standard definition, is “treatment intended to relieve or heal a disorder.”6
This treatment-centered orientation is consistent with the AMTA position on ASD accounted for above. From that stance, ASDs are treated by music therapists using “music interventions” that aim to “effect changes in behavior and facilitate development of skills,” “reduce negative and/or self-stimulatory responses and increase participation in more appropriate and socially acceptable ways,” and “remediate some speech/language skills.” This is certainly a valid approach that has yielded benefits for many autistic people, improving quality of life and promoting the development of useful skills. Yet there are many other potentially fruitful approaches as well, and applied ethnomusicology in particular lends itself to a rather different set of epistemological priorities and practical methods.
As an ethnomusicologist who works in the area of autism, my interests are in music making, not music interventions; my epistemological focus is on autism as a cultural way of being, not a disorder (cf. Straus, 2013); my aspiration is to comprehend and engage with people labeled “autistic” on their own terms to the greatest extent possible, rather than to effect changes in their behavior, facilitate the development of specific skills, or remediate their actions in social settings to bring them in line with normative expectations.
(p. 281) In short, my framework is ethnographic rather than therapeutic, musicological rather than pathological. I am not trying to provide treatment or to cure autism through musical methods or any other. Instead, I am trying to better understand and communicate with people identified as autistic by hanging out and making music with them, having conversations and listening well, and getting to know who they are and what matters to them. To the extent that this work is directed toward effecting change of any kind, its main purpose is not to change autistic people in any way, but instead to change the often misguided ways that non-autistic, that is, neurotypical, people and institutions imagine, think about, and respond to autism and people who “have” it.
These priorities distinguish the approach of the present work not only from music therapy, but to a lesser degree from medical ethnomusicology as well. The progenitor of Artism, the Music-Play Project (MPP), which ran from 2005 to 2009 and was the subject of an earlier series of publications (Bakan et al., 2008a, 2008b; Bakan, 2009; Koen et al., 2008), was a medical ethnomusicology endeavor. Emphasizing both qualitative and quantitative measures of “social-emotional growth indicators” and gains in “response-ability,” MPP melded ethnographic and therapeutic priorities in a manner that aligned with the health and healing-oriented perspectives of much medical ethnomusicology (and indeed of much music therapy as well). Koen, Barz, and Brummel-Smith, in their introduction to The Oxford Handbook of Medical Ethnomusicology (Koen, 2008), define medical ethnomusicology as “a new field of integrative research and applied practice that explores holistically the roles of music and sound phenomena and related praxes in any cultural and clinical context of health and healing” (Koen, Barz, and Brummel-Smith, 2008, 3–4).7 The music-play protocols of MPP provided such a context in the therapeutic dimensions of their intent.
Artism is a different case. It is a project that aligns much more comfortably with the basic tenets of applied ethnomusicology than with those of medical ethnomusicology. Accounting for this difference, at least in part, is a personal history of transformative experiences that traces back to a cathartic musical encounter I had in 2003. From there, the story runs through the life course of the Music-Play Project, then headlong into a moment of crisis in 2010. This, in turn, paves the way for the founding of the Artism Ensemble in 2011, and finally leads to a series of discoveries in the anthropology of autism, disability studies, and the autistic self-advocacy and neurodiversity movements that have subsequently reconfigured how I think about music, autism, and ethnomusicology.
My path to becoming an ethnomusicologist of autism began in the year 2003, when a three-year-old relative of mine, Mark,8 was diagnosed with a condition called Asperger’s syndrome.9 I had never heard of Asperger’s and became quite concerned when I learned that it was an autism spectrum disorder. I had a rather fuzzy image of what autism was at (p. 282) the time, one formed mainly by Dustin Hoffman’s performance in the movie Rain Man and by occasional encounters with disturbing, sensationalist media images in which autistic children were shown isolated in corners of rooms, rocking back and forth incessantly, banging their heads against walls, erupting into violent tantrums.
Mark certainly did not fit this image. Granted, he didn’t come across as your “typical” three-year-old kid either. He was often anxious. He carried his body kind of stiffly, clenching his fists and holding a lot of tension in his shoulders. He tended to avoid eye contact, except with his parents (especially his mother). His English-language vocabulary was large for his age, but he didn’t seem very interested in using it to actually communicate most of the time; rather, he spoke mainly in a language of his own invention, Skoofie, which was unfortunately unintelligible to others. When speaking Skoofie, he was very expressive and gestural, but when speaking English he tended to use a flat monotone and to stand or sit still, rarely employing hand gestures or body language. He did not like meeting new people—they scared him, made him anxious—and he would customarily retreat to the comfort of his bedroom whenever visitors came to his home, staying there until they departed. He had meltdowns and tantrums just like other children his age, but was prone to being inconsolable for rather long periods when they occurred.
For all that, he was an adorable, bright, and endearing little guy, a lot of fun to be around except when he was feeling especially out of sorts, and that really wasn’t all that often since he was happy much of the time. His bond with his mother was extremely close—theirs was a very warm and loving relationship—and among those whom he knew well he could be affectionate, funny, and expressive.
One night I was at Mark’s family’s house for a dinner party. He had sequestered himself in his room while the rest of us dined. This was as expected. My new Florida State University ethnomusicology colleague Benjamin Koen was at the gathering as well, and he and I decided to do some drumming together after the meal.
Ben and I were improvising and getting into a nice groove. My eyes were shut, as is my habit when I play. I felt a light tapping on my leg and looked down to see Mark sitting beside me on the floor, looking up. I was surprised, but delighted. He shifted his gaze away from me toward a pair of bongo drums (one of many options in a room full of percussion instruments) that were sitting next to him on the floor. Then he looked back up at me. I surmised that he wanted to jam, too, and that he was asking for permission to do so. I smiled at Mark and nodded encouragingly. He jumped in and started to play, immediately taking the rhythm in an entirely new direction. Ben and I excitedly followed him there. Mark’s eyes lit up. Then he took us to another musical place and we went there with him. He lit up some more, and next thing we knew he was singing, too, in a strong, clear, beautiful voice I had never heard before, continuing to drum all the while. It was quite magical.
And then it was over. Eight o’clock arrived, and right on cue Ben’s baby daughter melted down and started to cry. Moments later, the baby was bundled up and the Koens were off and away, headed toward home in their minivan. Mark disappeared for a few minutes and I assumed he had returned to the solace of his bedroom for the rest of the (p. 283) night. But then he reappeared in the living room. My wife Megan and I were sitting together on the couch. Mark came over and started talking to us. I don’t remember what he said (I wish I did) but what I do remember is that he was like a different kid from the Mark I had known. He looked relaxed, he spoke to us lucidly in English and accentuated his speech with fluid hand gestures and body language, and the tension in his shoulders had melted away. He appeared altogether comfortable, at ease. Something about the social experience of drumming with Ben and me in the free, exploratory, improvisatory environment that we had spontaneously created together seemed to have tapped into something deep.
Precisely what that something was I will never fully know, but at the time and up until the present I remain convinced that it had a lot to do with Mark’s sense that Ben and I were really listening to him, listening to what he had to say to us and how he wanted to connect with us through his drumming, his singing, his playing.10 We weren’t trying to tell him what to do or how to do it right; we weren’t directing the flow of the music or the course of the improvisation, though we were certainly contributing to it. We were paying attention, enjoying, responding, communicating, appreciating, intuitively reaching out to meet Mark where he was and wanted to be, and then traveling elsewhere with him from there. The extent to which we succeeded in these various ventures was not really the point, for I firmly believe that what mattered most for Mark was the simple fact that we were trying. And I firmly believe, too, that with the exception of his mother and a few select others, there had been far too few people in Mark’s life who had really done this, who had really tried to co-experience the world through his eyes and ears and thoughts and feelings, rather than assuming they had the right, even the obligation, to try to correct and normalize his “unusual” behavior or, perhaps even worse, to tune him out altogether.
That evening of drumming with Mark and Ben had a transformative impact on me. I was inspired by it to move in a new direction as both a musician and an ethnomusicologist, one that would ultimately take me to the new frontier of becoming an applied ethnomusicologist of autism.
A goal of capturing lightning in a bottle was central to that journey. The kind of experience that Mark, Ben, and I had shared was something I wanted to cultivate so that other kids on the spectrum—and other people generally—could enjoy it as well. I didn’t see this as a potential cure for autism or as a path toward “normalizing” autistic behavior; these kids were getting enough therapies and interventions already. I just wanted to help make things happen that would enable them to have fun, feel successful, and play and explore the way they wanted to, rather than according to everybody else’s rules all the time; and I wanted their parents to be a part of all that, too, both in terms of sharing in the experience actively and getting to see their kids having a good time doing (p. 284) something well, with “doing well” defined not in terms of the criteria of some test or standard of normalcy or functionality, but rather in terms of simply taking some pleasure in the experience of a meaningful activity undertaken in the company of others. These would appear to be rather modest goals, but in the domain of autism, bereft as it has historically been of the most fundamental measures of regard and respect for the integrity and value of autistic personhood, they turned out to be not so modest at all.
From such goals and aspirations was born the Music-Play Project, or MPP, an interdisciplinary venture produced mainly under the banner of medical ethnomusicology and involving a collaborative team led by Benjamin Koen and myself and including autism research scientists, physicians, and a cognitive psychologist (Bakan et al., 2008a, 2008b; Koen et al., 2008, Bakan, 2009). Initially, the project took its name from a different acronym, CHIMP, which stood for the Children’s Happiness Integrative Music Project. We were dissuaded from the use of this name, however, when an anonymous reviewer of one of our first grant proposals expressed that it was dangerously suggestive of early experiments in “abnormal psychology” that relied on data culled from studies of monkey and chimpanzee behavior. The name CHIMP was summarily dumped, but not without regret on my part, as I had rather liked the emphasis on happiness and integration that the spelled-out version of the acronym stressed.
So began what I now have come to regard as a process of progressive deterioration for the program, which from that point forward was known as the Music-Play Project. The more deeply I immersed myself in the medical-scientific literature on autism and ASD, with its heavy emphasis on deficits, disorders, and impairments—and on interventions, therapies, and cures—the more fully I was seduced into that literature’s paradigmatic assumptions insisting that measurable outcomes of benefits, preferably quantitative ones drawn from the analysis of data collected in randomized clinical trials with controls, would be the only valid measures of the project’s success. The more fully I was pressured into accepting the idea that the capacity of MPP to meet its “potential” and make a real “impact” were dependent on our success in securing grants from scientific research funding agencies and having our articles published by peer-reviewed scientific journals, the more I felt the core goals and aspirations that had inspired the project in the first place slipping away from me.
As MPP moved increasingly science-ward, even as I grasped desperately at the evasive notion that this was being done in a synergistic way that did not compromise the project’s original intentions (Bakan, 2009), it progressively diverged from what it had been at the start and from what I had always believed it should remain. Try as we did to keep it from doing so, MPP became less about play, less about music, less about the kids and the families, and more about the results, the measures, the documentation of benefits and gains, and the potential impact beyond the immediate environment of the actual people involved.
The Music-Play Project had begun in 2005 and continued, on and off, through several different phases and studies, until 2009. Many wonderful things happened during its course, but the growing disconnect between what had gotten me into it and what (p. 285) it had become eventually became too great. To play in the sandbox of medical-scientific autism research meant to play by the rules of autism science. This translated into identifying and targeting specific areas of social, communicative, and behavioral deficit and impairment associated with ASD and developing testable methods for empirically determining what, if any, benefits our music-play programs were providing in terms of improving the symptoms and lessening the deficits of children participating in our project. In other words, the goal was to effect positive changes toward more “normal” and “functional” ways of acting, reacting, and relating on the part of these kids, which was precisely what I had not wanted this work to be about.
This recognition was sobering and disheartening. I snapped. I didn’t want to do this anymore. I didn’t want to “measure” these kids, “normalize” them, or “cure” them; I didn’t want to be doing therapy of any kind. I just wanted to play music with them and give them and their parents a chance to have some fun and blow off some steam, to be creative and social and engaged on their terms instead of somebody else’s, to be playful and imaginative without having to worry about measuring up. I craved the comfort and ease that Mark and Ben and I had shared on that pivotal night back in 2003, for the kids and their parents, and also for me. “Sciencing about autism” made no more sense to me than “sciencing about music” ever had, and it constituted a similar affront to my musical and humanistic sensibilities (Merriam, 1964; Bakan, 1999: 15).
So I let it go. By 2009, Ben had moved to China and I had completed a major phase of the Music-Play Project, a randomized clinical trial measuring “social-emotional growth indicators” that was based on the SCERTS model of ASD assessment (Bakan, 2009; Prizant et al., 2006). I presented my findings at the 2010 Society for Ethnomusicology meeting and determined that it was time to close this chapter of my career and move on to something else.
A couple of months later, though, I received a call from Jennifer Hoesing at the Florida Department of State’s Division of Cultural Affairs (DCA). She was familiar with the Music-Play Project work and was calling to inquire about whether I might be interested in submitting a proposal for a DCA-administered, National Endowment for the Arts–funded grant in support of the continuation of my music and autism work. Immediately, I envisioned a new path forward. Arts and culture—these were my comfort zones; these were the places I lived as a musician, as an ethnomusicologist. What had been the Music-Play Project, mired down in the priorities of scientific autism research, assessment, and intervention, could potentially become something very different: the Artism Music Project.
Artism would be about playing music and improvising, and about celebrating and modeling neurodiversity. In Artism, kids with autism would be the kinds of people and musicians they wanted to be, and they would call the shots. And it would feature a real band, the Artism Ensemble, made up of the kids, their parents, and a talented and diverse group of professional musicians who would together go out and play concerts—concerts where people would get to hear and see all of us having a good time being creative, being ourselves, and being together.
(p. 286) More than any amount of statistical data or academic rhetoric, I reasoned, such a project had the potential to change public perceptions of autistic people for the better, to foster autism acceptance by presenting an alternative and affirming image of lived autistic realities and neurodiversity. Identifying people with labels like “autistic” or “disabled” inevitably creates frames in which particular biases or predispositions toward those individuals are activated. This applies to perceptions and assessments of musical performances as much as to anything else. Yet as the music education researchers Judith Jellison and Patricia Flowers have noted (1991: 323), “when the… actual performance is seen to be unlike that suggested by the label, initial biases have been shown to be overcome.”
I was convinced that performances by the Artism Ensemble would do that kind of work, at once celebrating and defying the label of “autistic” in ways that countered all the entrenched mythologies of autistic tragedy and negation. Even more important, I was convinced that this imagined “Artism Ensemble” would offer opportunities and outlets for people with and without autism to experience special moments of comfort, joy, ease, and new understanding, as Mark and Ben and I had on the occasion that had launched the whole thing forward in the first place.
I prepared the proposal and it was successful. The grant was awarded in 2010 and the Artism Ensemble came into existence in January 2011, continuing under the aegis of grant funding through the summer of 2013.11
“Come in,” I say, inviting my twelve-year-old Artism Ensemble bandmate Mara Chasar into my office on a sweltering hot August afternoon in 2013. Mara enters with eyes downcast and sporting a mild frown. She seems nervous, or at least a bit uncomfortable. For three years now, the main context in which she and I have interacted has been the E-WoMP, or Exploratory World Music Playground, in Tallahassee, Florida. There, together with three or four other children on the autism spectrum, some of the children’s parents, and accomplished musicians hailing from locations as far afield as Peru, Bolivia, Trinidad, and China, Mara and I have met regularly to rehearse, play, and make music together. We have also taken the E-WoMP on the road, performing in Artism Ensemble concerts at venues around Tallahassee and in other parts of Florida.
Mara and I have actually known each other and have been playing music together on and off for more than four years by this time. We first became acquainted in 2009 when she and her parents participated in a three-week program of the Music-Play Project. We then reconnected when I invited them to join the Artism Ensemble. They played in the group during its inaugural 2011 season, took a hiatus for a year in 2012, and rejoined in 2013. The 2013 season had concluded with a big concert in Orlando for the Opening (p. 287) General Session of the annual conference of the Society for Disability Studies (SDS), just a few weeks prior to the present meeting in my office.
Now here we are, sitting in the stillness of my fake wood-paneled digs in the College of Music at FSU, surrounded by computer and audio equipment and multiple shelves stuffed with books and folders. It’s got to be a bit off-putting for Mara, I think to myself. Maybe this was a bad idea.
But things immediately change for the better the moment Mara feasts her eyes on the nice black office chair sitting adjacent to my desk. She plops herself down and gives it a good kick start.
“Whee!!” she exclaims with glee as she tucks up her knees and whirls about in the chair, over and over and over again. The downcast eyes alight and open wide. The frown becomes a radiant smile and Mara’s laughter fills the room.
“I love spinny chairs!” she shrieks. “Spinny chair! Everyone loves the spinny chair!!”
She spins and spins, round and round, and she continues spinning as she quickly modulates from her playful tone to a more serious one.
“So what do you want?” she asks me.
I’m a bit thrown off by the question.
“Want?” I say, pondering, searching for just the right way to put it. “Oh, what do I want—well, I just want to talk to you, about autism and Asperger’s and stuff like that,” I venture, not sure how that’s going to go over. Mara continues to spin. “You know,” I continue, “you had such wonderful things to say about all that stuff during the question-and-answer session after our Orlando concert with Artism, and since then I’ve been reading this book written by autistic people—it’s called Loud Hands: Autistic People, Speaking (Bascom, 2012a)—and what you were saying is really in line with what they’re saying. So now I’m trying to write about music, and autism, and Artism and all that, and I think it would be great if you could write with me, because you have such amazing insights and I think having you share those would make the things I’m working on way better than anything I could write by myself.”
“So you want me to help you write a book?”
“Well, yeah, a book, some articles, a few different things actually. Is that OK?”
“I think that sounds cool.”
“Great. So how about you talk and I’ll type out what you say, or else you can just sit here at the computer and type yourself if you prefer. That’s fine, too.”
“You type,” she says. “I like spinny chairs!”
“Remember how our concert in Orlando was at that conference, you know, the one for the Disability Studies society?”
“Well, after the rest of you guys left, I stayed around for the rest of the conference. There was this one session that was run by people who do disability studies but who also have autism themselves, and they thought that our concert was sponsored by this big organization called Autism Speaks. It wasn’t, but they thought it was because I had handed out this questionnaire to the audience and one of the questions had to do with (p. 288) ‘promoting autism awareness.’ Well, it turns out that ‘autism awareness’ is a phrase that these people, and a lot of other autistic people, too, really hate. They think it’s offensive, because what they want is autism acceptance, not autism awareness; because a main mission of Autism Speaks is to find a cure for autism, to get rid of it, and these people with autism say they don’t want to be cured, they just want to be who they are and to be accepted for being who they are. So then—”
“Who says autism is a bad thing?” Mara interjects in a tone of righteous indignation. “It sounds like this [Autism Speaks] organization is treating autism like cholera. Autism isn’t cholera; it isn’t some disease you can just cure. It’s just there. You don’t need to be aware of it; you just have to accept that it’s there. I mean, you can’t accept cholera; it’s a disease.”
“You told me that a lot of people find this organization offensive,” Mara continues, “and honestly, you know, [from what you’ve said about it,] I do too. Awareness and acceptance are a lot different from each other. Yeah. Awareness means you know it’s there, but acceptance means you know it’s there and it’s not going to go away. Of course, you can’t accept something if you don’t know it’s there, so I guess we have to be aware of it and accept it. So if that organization’s thing is ‘Autism Awareness,’ maybe they should change it to ‘Autism Awareness and Acceptance.’ And honestly, curing autism doesn’t come in some kind of a pill or medication. And there is no cure. There really isn’t. It’s just there, wound into your personality.”
Mara has stopped spinning momentarily. Now she resumes. “Spinning chairs! Spinning chairs make everyone happy!” she sings. Then, in a mock serious tone, “I get distracted easily,” and after that, throwing back her hair and laughing wildly, “especially by things like this that are SPINNY CHAIRS!!”
“You know,” I say to Mara, laughing along with her as she continues to spin away, “the scientists and the doctors and therapists and people like that who specialize in autism, and the people in those organizations like Autism Speaks, would say that what you’re doing now—spinning and spinning and spinning while we have this conversation—is an example of stimming, that it’s a ‘symptom’ of your Asperger’s or your autism or whatever.”
“Stim-what?” Mara asks, seemingly confused. “What is that?”
“Stimming,” I repeat. “It’s a word that they use to describe so-called ‘self-stimulating behaviors’ that autistic people do when they’re, I don’t know, feeling stressed or uncomfortable or whatever, or maybe the scientists don’t know why they do those things but they know they do them and they say that’s one of the things that makes them autistic.”
Mara’s laughter now escalates to a fever pitch.
“That’s just ridiculous!” she states incredulously. “I mean, I bet that the president has a spinny chair and sometimes he spins around.”
“Which president? The president of the United States or the president of Autism Speaks?”
“Both of them,” she fires back. “I’m sure they look around and see if their security guards are around, and if they see the coast is clear they just kind of silently spin around (p. 289) in their chair. They probably don’t laugh like I do because the president doesn’t laugh, or at least lots of people think that, but that’s just another stereotype—but still. Spinny chairs. I like spinny chairs.”
There is a brief pause in the conversation as Mara continues to spin.
“I like to talk a lot,” she explains, “but the president likes to talk a lot too. And he gives all those speeches, so why don’t they say that the president needs to be ‘cured,’ because the president talks a lot too. If he’s like me in any way, he needs to be ‘cured,’ doesn’t he?”
I chuckle. Mara stops spinning, leans forward, and points to the spot on my computer monitor where I have just transcribed her last remark.
“Just say that I said that sarcastically,” she insists. “I don’t want to offend the president.”
“I have something else I wanted to say,” Mara announces after another brief pause, resuming her spinning at the same time. “You know, I think there should be a type of therapy that involves spinny chairs. There should be a room where there are rows and rows of spinny chairs, and a bunch of people would file in and sit down, and they’d all talk to each other and say, ‘I wonder what this new therapy is?’ And then the therapist would walk in and tell everyone to be quiet, and then he or she would say, ‘Now, spin around in your chairs really fast!’ and everyone would at first be really skeptical, but then someone would try it, whirling around and around. They’d say, ‘Hey, this is fun!’ and everyone else would start to do it, and then the whole room would be spinning around and around, or at least to everyone in the spinny chairs. Or a therapy where everyone gets together and just types or writes stories together. When I’m bored or sad or stressed, I like to sit down, ignore everyone, and just write for hours on end.
“You know, when I hear about people saying people with autism aren’t ‘normal’ and get surprised when we do things like use big words or do things they can’t, I just think: We are normal. We learn things just like ‘normal’ people do, we talk when we feel like it to who we feel like talking to just like ‘normal’ people do, we play and dream and laugh and love just like ‘normal’ people do, even if we’re too shy to admit it sometimes.
“Some of us have a few problems, but why do ‘normal’ people have to be the ones to ‘fix’ them?” Mara asks rhetorically, after which she instructs me to be sure to put scare quotes around each iteration of “normal” and around the word “fix” in the preceding section.
“Why are all the therapists ‘normal’ and we’re not?” she adds. “In fact, the therapists should be people who used to have severe autism or Asperger’s, or whatever, and then found out how to deal with their problems. Having a Ph.D. in psychology doesn’t always make you an expert.”
“What about people like me,” I ask, “you know, who aren’t autistic but work with people who are?”
“Well, you people seem pretty nice,” Mara answers matter-of-factly, “and you seem to know what you’re talking about, so people like you would be pretty good for that role. But I still like the idea of doctors and stuff who have autism.”
(p. 290) Autism and ASD: The Official Story
Autism spectrum disorder (ASD) is a range of complex neurodevelopmental disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior. Autistic disorder, sometimes called autism or classical ASD, is the most severe form of ASD, while other conditions along the spectrum include a milder form known as Asperger syndrome, and childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS).12 Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group. Experts estimate that 1 out of 88 children age 8 will have an ASD… . Males are four times more likely to have an ASD than females… .
So states the “Autism Fact Sheet” published on the website of the US National Institutes of Health’s National Institute of Neurological Disorders and Stroke (NINDS). Later in the same document, NINDS declares:
The hallmark feature of ASD is impaired social interaction… . Children with an ASD… have difficulty interpreting what others are thinking or feeling because they can’t understand social cues, such as tone of voice or facial expressions, and don’t watch other people’s faces for clues about appropriate behavior. They lack empathy.
Many children with an ASD engage in repetitive movements such as rocking and twirling, or in self-abusive behavior such as biting or head-banging. They… don’t know how to play interactively with other children. Some speak in a sing-song voice about a narrow range of favorite topics, with little regard for the interests of the person to whom they are speaking… .
Elsewhere, the “Fact Sheet” provides a list of primary indicators leading to an ASD diagnosis, especially in individuals beyond the infancy/toddler years: impaired ability to make friends with peers, impaired ability to initiate or sustain a conversation with others, absence or impairment of imaginative and social play, restricted patterns of interest that are abnormal in intensity or focus, preoccupation with certain objects or subjects, inflexible adherence to specific routines or rituals, and stereotyped, repetitive, or unusual use of language.
As for treatment options, there “is no cure for ASDs,” according to NINDS. “Therapies and behavioral interventions are designed to remedy specific symptoms and can bring about substantial improvement… . Most health care professionals agree that the earlier the intervention, the better… . Therapists use highly structured and intensive skill-oriented training sessions to help children develop social and language skills, such as Applied Behavioral Analysis… .” (NINDS, 2013).
(p. 291) Deficit-centrism
The official story on autism and ASDs, as represented by the NINDS “Autism Fact Sheet” and other research and informational sources deemed credible and authoritative, is mainly a bleak one. It is the kind of story that affirms anthropologist Olga Solomon’s assertion that there is “a remarkable silence, an absence of discourse about hope in biomedicine’s views on autism…” (Solomon, 2010a: 253),13 and that motivates comments from autistic activists such as the following one from Temple Grandin:
I’m certainly not saying we should lose sight of the need to work on deficits. But… the focus on deficits is so intense and so automatic that people lose sight of the strengths [of autistic people]. If even the experts can’t stop thinking about what’s wrong instead of what could be better, how can anyone expect the families who are dealing with autism on a daily basis to think any differently?
(Grandin and Panek, 2013: 180–181;italics in original)
How indeed? And even Grandin might be accused of not going far enough in her critique of rampant deficit-centrism, for in highlighting the plight of “the families who are dealing with autism,” she diverts attention away from autistic people themselves. Consider what the autistic self-advocate Penni Winter has to say on this matter:
Our Autism is called a ‘tragedy’ or even, by some parent groups, ‘the enemy’ to be fought at all costs, and the [apparent] increase in our numbers is referred to as an ‘epidemic,’ as if Autism were some dread disease. We’re said to ‘ruin’ our parents’ lives and break up marriages, and we get discussed in terms of the ‘burden’ we are on our families, the ‘difficulty’ we cause others. What we might feel or think or want is hardly even asked—because, oh yeah, that’s right, we don’t have feelings or needs. It’s the parents and families who are focused on, because they are deemed to be the ones that ‘matter,’ not the individuals with Autism.
(Winter, 2012: 119; square brackets in original)
There are exceptions to the pervasive tones of deficit-centrism and bleakness, even in the most mainstream contexts. The NINDS “Autism Fact Sheet” does hold out hope for people with ASDs across the lifespan, indicating that for many, “symptoms improve with age” to the extent that they “are able to work successfully and live independently or within a supportive environment” (NINDS, 2013). The website of Autism Speaks (Autism Speaks, n.d. “a”) presents a similar position and adds to it with the pronouncement that “all [people with ASDs] deserve the opportunity to work productively, develop meaningful and fulfilling relationships and enjoy life.” The same website now includes an “Autism Acceptance” page as well (Autism Speaks, n.d. “b”)—presumably a response to the attacks levied against the organization’s ubiquitous “Autism Awareness” campaign by autistic self-advocates. And the NINDS “Fact Sheet” includes a link to the (p. 292) website of Autism Network International (ANI), a leading autistic self-advocacy organization, on its list of resources for additional information.
Despite such occasional nods to alternate viewpoints and priorities, however, the consistent message from the mainstream remains intact: where autism is concerned, nothing is good unless it gets better, with “good” and “better” equating to an ideal of “normal,” “indistinguishable from normal,” or at least “closer to normal.” Within such an epistemological quagmire, there can be no true achievement of what autistic self-advocates are seeking in their calls for autism acceptance; in their view, this needs to change.
“It starts with the basic, foundational idea that there is nothing wrong with us. We are fine,” writes Julia Bascom in her foreword to Loud Hands.14 “We are complete, complex, human beings leading rich and meaningful existences and deserving dignity, respect, human rights, and the primary voice in the conversation about us” (Bascom, 2012b: 10).
Building on this premise, Penni Winter explains:
One of the biggest and most insidious maltreatements [of autistic people] involves the concept and practise of what I call ‘normalisation,’ which springs out of the belief that Autism is an inferior or ‘wrong’ state. Thus ‘becoming normal’ is seen by many parents and therapists as the ultimate goal… and the aim of all therapy is to make us ‘indistinguishable’ from our ‘normal’ peers. Autism thus becomes something to be got rid of, no matter what sacrifices must be made. Some would even rather see their child dead than autistic… [What advocates of normalisation fail to see] is the real cost of this normalisation, which can be very high indeed… they are subscribing to a huge fallacy—the one which says that the Autism is somehow separate from, and ‘burying’, the ‘real’ (i.e.: normal) person underneath. Not so. Autism runs all the way through. It’s a deep neurological difference. It can no more be stripped away or ‘cured’ than our gender or race can be ‘cured’ or taken away. It’s that central to our being [cf. Sinclair 2012 : 16–17].
(Winter, 2012: 115–117)
The autistic author and activist Ari Ne’eman, who serves on the US government’s National Council on Disability and is the President and co-founder of the Autistic Self Advocacy Network, problematizes and nuances the issues raised by Bascom and Winter in the following passages from an essay he wrote on the future of autism advocacy:
Sadly, the traditional autism community has been driven by a set of priorities different from our own. Led almost exclusively by those not on the autism spectrum, it has made harmful decisions without our input… . It is our belief that the traditional priorities of autism advocacy, which focus on eliminating the autism spectrum rather than pursuing quality of life, communication, and inclusion for all autistic people, need to be reset… . The object of autism advocacy should not be a world without autistic people—it should be a world in which autistic people can enjoy the same rights, opportunities and quality of life as any of our neurotypical peers… .
(p. 293) Does this mean that we should not be engaged in trying to ameliorate the many challenges associated with being autistic? Of course not. What it does mean is that, first, we should target our efforts towards the real challenges we face, rather than towards a broader, nebulous concept of “curing” autism that is offensive to many of the people that it aims to benefit. Second, we should in every instance consider the fact that it is often social barriers rather than disability itself that pose the problems we face.
(Ne’eman, 2012: 88–90, 93–94)
The issues are highly complex. Autistic self-advocates such as Bascom, Winter, and Ne’eman share core convictions regarding the guiding priorities of autistic advocacy, but they do not speak in unison, and they hold widely divergent views on a host of matters. Furthermore, the positions they espouse, individually and collectively, are by no means representative of a unified stance where the values and priorities of autistic people at large are concerned. There are many on the spectrum who openly oppose their views, and this does not even account for the large number who do not as yet have any means at all to effectively communicate with other people. The question of who is best qualified to speak and work on behalf of their interests—parents or other family members, autistic self-advocates, researchers, clinicians, or therapists—is one of the most vexing and contentious in the entire realm of autism-related discourse and policymaking. And it would be naïve to suggest that the kinds of supports, accommodations, and treatment protocols that have emerged through the dedicated efforts of medical-scientific researchers, clinicians, and therapists have been neither beneficial to nor appreciated by a great many autistic people. Much valuable work has been done, and many lives have been changed positively as a result of it.
In approaching this chapter, then, I am aware that autistic self-advocacy and neurodiversity have their limitations, problems, critics, and internal divisions. But coming from the relativistic epistemological foundation that I do as an ethnomusicologist, I remain convinced that listening to what autistic people have to say—verbally, musically, and otherwise—is the best and most appropriate first step toward an engaged and applied ethnomusicology of autism. A paradigm shift from pathology to neurodiversity is essential to this development.
Toward a Neurodiverse Approach to Applied Ethnomusicology
Mainstream discourses relating to autism and ASD routinely posit a dichotomy of “autistic” to “normal.” This is unacceptable from an autistic self-advocacy perspective. The term “normal” must be replaced if the conversation is to move forward productively; neurotypical is the suggested replacement word. The autistic scholar and author (p. 294) Nick Walker explains that this is a word which “allows us to talk about members of the dominant neurological group without implicitly reinforcing that group’s privileged position (and our own marginalization) by referring to them as ‘normal’ ” (Walker, 2012: 233).
Walker similarly advocates for the term neurodiversity for the larger movement of which autistic self-advocacy is a part, and neurominority as a designation for autistic culture: “Neurotypicals are the majority; Autistics are a neurominority,” he explains to illustrate the latter. As for the former, neurodiversity is defined by Walker as “the understanding of neurological variation as a natural form of human diversity, subject to the same societal dynamics as other forms of diversity,” such as race, gender, ethnicity, or sexual orientation (Walker, 2012: 233). He argues convincingly of the need for a shift from a pathology paradigm of autism (and human neurological variation generally) to a neurodiversity paradigm. In the epistemology of the pathology paradigm, there is belief in a “right,” “normal,” or “healthy” way for human brains and minds to be configured and to function. Substantial divergence from this dominant “normal” standard equates with the blanket assessment that there is “Something Wrong With You” (Walker, 2012: 227). Contrastingly, in the epistemology of the neurodiversity paradigm, variation in the configuration and functioning of human brains and minds is regarded as “a natural, healthy, and valuable form of human diversity,” and “all of the diversity dynamics (e.g., dynamics of power, privilege, and marginalization) that manifest in society in relation to other forms of human diversity… also manifest in relation to neurodiversity” (2012: 228).
As Walker attests,
If you reject the fundamental premises of the pathology paradigm, and accept the premises of the neurodiversity paradigm, then it turns out that you don’t have a disorder after all. And it turns out that maybe you function exactly as you ought to function, and that you just live in a society that isn’t sufficiently enlightened to effectively integrate people who function like you. And that maybe the troubles in your life have not been the result of any inherent wrongness in you. And that maybe everything you’ve heard about Autism is open to question, and that your true potential is unknown and is yours to explore.
(Walker, 2012: 237)
The Artism Ensemble: A Different Way to Play
The kind of neurodiverse world that Walker envisions in the above quotation mirrors the kind of musicultural space that the Artism Ensemble aspires to realize. Making music, performing publicly, and doing ethnography are our main tools, relativism and advocacy our epistemological cornerstones. In the E-WoMP, autistic preference and (p. 295) action are not regarded as symptomatic; they are accepted for what they are—viable ways of being human—and they are creatively explored. Challenges and frustrations that arise within the group and between its members—and they do arise—are confronted and dealt with as a matter of course. They are part and parcel of the band’s basic social dynamic and are never merely explained away as manifestations of the autism-related problems of particular individuals. The constructs of autism and ASDs—or, as we prefer to call them, ASCs, or autism spectrum conditions—are always out in the open, but in any given situation they are subject to either outright dismissal or vigorous critical assessment on account of their perceived irrelevance, inaccuracy, or inadequacy.
The ensemble itself is a large group of somewhat fluid proportions. On any given occasion, it will include between three and five children diagnosed with ASCs, one or two parents of each child, and anywhere from five to nine staff musicians. The total number of players ranges from about a dozen to upwards of 20.
Artism’s Exploratory World Music Playground facility, the E-WoMP, comprises a large array of percussion instruments that both the children and adult players are free to explore, as they wish to and on their own terms, individually or collectively—thus the “playground” identifier in the name. Most of the E-WoMP’s instruments were manufactured by project sponsor Remo, and are modeled after traditional drums and other percussion instruments originating in West Africa, Latin America, Native America, and elsewhere. They include djembes, congas, bongos, ocean drums, thunder tubes, cuicas, a Native American-type gathering drum, tom-toms, egg shakers, and steelpans (steel drums).
All instruments selected for the E-WoMP must meet two basic requirements: high yield for low input (i.e., easy to produce pleasing/satisfying sounds without need of specialized training) and safety for use by the children in the program. Flexible rubber swimming pool dive sticks are the main types of mallets, and other mallets and sticks with padded or rubber ends are used as well. The use of rubber-tipped and padded striking implements is important not only for the physical safety of participants, but also for keeping volume levels in check and avoiding harsh timbres. Sensitivities to loud and harsh sounds are common among people with autism, making attention to such sensory issues a priority in any music-centered project.
Artism’s staff musicians play both the E-WoMP percussion instruments and their own instruments, including guitar, bass, steelpan, flute, and clarinet. In previous years, other instruments, such as zheng and didgeridoo, were also featured. The diverse musical backgrounds of the staff contribute to the profusely intercultural palette of resources from which Artism’s music springs. Compositions, arrangements, and directed improvisations by the children reflect this musicultural diversity, as elements of festejo, rumba, flamenco, calypso, raga, and gamelan combine with those of jazz, blues, funk, hip-hop, rock, classical, and other genres—as well as with ideas and concepts that are uniquely the children’s own and bear no recognizable resemblance to any pre-existing musical genre or tradition per se—to forge the unique sound and approach that define Artism’s music.
(p. 296) Applying Ethnography in the Ethnomusicology of Autism
“Medical culture—what has been described and vigorously critiqued within Disability Studies as the medical model [of disability]—has certain defining attributes,” writes Joseph Straus in his essay “Autism as Culture.” “First, medical culture treats disability as pathology, either a deficit or an excess with respect to some normative standard. Second, the pathology resides inside the individual body in a determinate, concrete location. Third, the goals of the enterprise are diagnosis and cure” (Straus, 2013: 462).15
Whether describing medical models of disability or pathology paradigms of autism, thinkers like Straus and Walker pinpoint the same basic epistemological premises. Proponents of any such models or paradigms, in their various roles as researchers, physicians, or therapists, as teachers, aides, or even parents, operate from a fundamental position that there is a need to change the autistic or otherwise “disabled” person. They are, then, at least in their relations and interactions with their subjects, patients, clients, students, or children, agents of change in search of solutions.
I do not consider myself to be an agent of change in this sense. Neither do I fully see myself as an agent of change in the alternate sense that disability studies scholars such as Tobin Siebers have posited relative to the so-called social model of disability, which “opposes the medical model by defining disability relative to the social and built environment, arguing that disabling environments produce disability in bodies and require interventions at the level of social justice” (Siebers, 2008: 25).
It is principally an ethnographic model, or at least way of thinking, that guides me in working ethnomusicologically on autism. I want to get to know and understand autistic people according to their terms and from their perspectives: learning from them, sharing experiences with them, comprehending their conceptions and values of community, personhood, social experience, humor, work and play, pleasure and pain, joy and suffering, and of course music. Toward such ends I concur with Straus’s insistence that we must take “the concept of ‘neurodiversity’ as a point of departure” as we “seek to understand autism as a way of being in the world, a world-view enshrined in a culture… a difference, not a deficit” (2013: 467).
The challenges of working ethnographically on autism and neurodiversity are in some respects unique, but at a fundamental epistemological level they mirror those of ethnographic research generally. Consider, for example, the following comments by Jim Sinclair, which, were it not for the specific references to autism and “your child” (the original context was a presentation for parents of children with ASDs), could readily be mistaken for a passage from an introductory manual on ethnographic fieldwork:
It takes more work to communicate with someone whose native language isn’t the same as yours. And autism goes deeper than language and culture; autistic people are “foreigners” in any society. You’re going to have to give up your assumptions about (p. 297) shared meanings. You’re going to have to learn to back up to levels more basic than you’ve probably thought about before, to translate, and to check to make sure your translations are understood. You’re going to have to give up the certainty that comes of being on your own familiar territory, of knowing you’re in charge, and let your child teach you a little of her language, guide you a little way into his world.
(Sinclair, 2012 : 17)
Artism and Applied Ethnomusicology
As an ethnomusicologist, I am interested in the music, thoughts, lives, and musical communities of the autistic children with whom I currently work and play music in much the same way that I was interested in the music, thoughts, lives, and musical communities of Balinese gamelan musicians with whom I worked and played music in Indonesia in the 1980s and 1990s (Bakan, 1999). I did not endeavor to remediate the performance practices of my Balinese fellow musicians, nor cure them of their preference for paired tunings over equal tempered ones. I assumed that these Balinese musicians were competent practitioners of the Balinese musical arts they practiced. I assumed that their distinctive clusters of behaviors, abilities, and attitudes in musical and social practice reflected individual manifestations of a broader Balinese worldview and ontology. I welcomed opportunities to learn from them through musical and social interactions, through performances and conversations that yielded ethnomusicological insights into Balinese ways of being, and of being musical.
I assume similar things and welcome similar experiences and insights in my work with the Artism Ensemble. Entering the E-WoMP, the principal site of Artism musical production, I approach matters much as I did when entering the bale banjar, the principal site of Balinese gamelan music production: as a learning musician, a curious and committed ethnographer, and a co-participant in the making of music and cultural community.16 Here, though, the culture-bearers are not musicians in Bali who play on a gamelan but American children on the autism spectrum who play on an E-WoMP. It is these children who direct Artism’s musical proceedings, guiding the course of group improvisations, coming up with musical themes and motives that under their own sure-handed ensemble direction take shape and blossom into full-blown compositions, selecting pre-existing materials—a melody from Liszt’s Hungarian Rhapsody No. 2, a Bo Diddley beat under an extemporized rendering of Dr. Seuss’s Green Eggs and Ham, a steelpan-led take on the Beatles’ “A Hard Day’s Night”—from which to create inspired arrangements that cleverly combine passages of pre-composed and improvised music.
As for the adult members of the ensemble—the professional musicians and “non-musician” parents alike—we are not there to teach or direct the children; rather, we are there to learn from and respond to them. We apply whatever skills and attributes we bring to the E-WoMP, individually and collectively, to nurture the children’s (p. 298) creativity, agency, individual and social aspirations (musical and otherwise), and reciprocity. There are no pre-established repertoires, right or wrong notes, specific musical goals or demands, or defined expectations of any kind beyond ensuring that all participants contribute to maintaining a safe environment emphasizing mutual respect and support for one another.
Typically, rehearsals and concerts move in round-robin fashion from one piece to another, with each child taking charge of the composition/arrangement and ensemble direction duties for one or more of their own pieces per program. This protocol was not created or imposed by me or any of the other adult ensemble members, but was an organic and gradually forming outgrowth of the children’s own desires for how Artism’s musical process should work, one that was worked out collectively among them in rehearsals (with one child in particular, NICKstr, usually taking a leadership role in the deliberations). The development of this protocol seemed to emerge as a direct response to the children’s learning at the outset of the project that the ensemble was not going to function exclusively in a “play lab” environment, as in the Music-Play Project, but would additionally be getting out in public and performing concerts. Once they realized that they were going to have an audience, they almost immediately became committed to the idea of fashioning what one of the children, Coffeebot, referred to as a “high-quality musical product.” They also became quite deeply invested in delivering the goods with showmanship and style, that is, showmanship and style defined on their terms, which have often been deliciously and provocatively at odds with “conventional” musical tastes and sensibilities.
It was fascinating to witness this strategic and aesthetic shift from a participatory to a presentational mode of performance (Turino, 2008), as well as to both observe and be a participant in the making of the distinctive sound, look, feel, and identity that have come to define Artism’s unique musicultural brand over time. The accompanying note includes links to video examples from Artism rehearsals and concerts that provide some sense of the diverse character and range of the group’s repertoire.17
It is also important to mention that in both broad outlines and specific characteristics, the generative processes of musical production and social engagement that define the Artism Ensemble’s approach contrast in key regards with “best practices” positions regarding clinical, therapeutic, and educational approaches to working with people with autism. As Elizabeth Fein explains,
Individuals on the autism spectrum tend to gravitate toward pre-ordered systems in which the relationship between parts can be predicted based on rules, and struggle to function within open-ended systems requiring flexibility, improvisation, and intuition. They thus gravitate toward and function best under a “stable symbolic and social order,” under conditions where social expectations and givens are consistent, explicit, systematic, and shared between interlocutors.
(Fein, 2012: 69–70)
Artism’s open-ended approach, reliant as it is on flexibility, improvisation, and intuition, may be seen to push back against such logic to a considerable degree. Moreover, there is no (p. 299) doubt that the children in the group (and also the adults) do sometimes struggle with the unpredictability and open-endedness of the process; it is even fair to surmise that their often exacting methods of directing the ensemble, as well as their frequent preference for creating music that can be precisely ordered and structured, reflect desires for increased control and certainty. But over time they have all come to revel in the possibilities for spontaneous invention and co-creation that the E-WoMP affords, too, each in their own way.
On the basis of what I have observed over the past decade, autistic people are no less spontaneous, intuitive, flexible, or improvisatory than other people. They can just appear to be so because they are so often forced to contend with situations and settings in which their particular attributes and preferences for expressing such qualities are demeaned, or are patronized, or are not even recognized by their interlocutors. The evidence coming from the autistic self-advocacy movement, as well as from Artism and similar types of projects (see, for example, Bagatell, 2010; Bascom 2012a; Fein, 2012), suggests that in situations where autistic people are given opportunities to have their talents enabled rather than disenabled, nurtured rather than quashed, and embraced for what they are rather than being targeted for remediation, they can and will thrive in ways that people without autism would never think possible unless they witnessed it firsthand. A primary purpose of Artism is therefore to provide just such people, that is, neurotypical people, with precisely that opportunity: to witness, enjoy, appreciate, and celebrate autistic ability rather than identify, symptomatize, marginalize, and take pity on autistic disability.
The child stars of the Artism Ensemble, together with their supporting cast of parents and professional musicians, make good and innovative music, make good culture and community, and make change. They do this through their compositions and arrangements, their improvisations, their concerts, and their public presentations of individual and collective selfhood. Change is achieved internally among the group’s members through our joint musicultural ventures and all that they reveal. It is achieved externally as we reach out to audiences through concerts in which Artism’s players, the children foremost of all, are applied to the cause of transforming public perceptions of autism from disability-centered to ability-centered ones, from recognition of a negating sort to recognition of the more affirming and celebratory kind.
A Critique of Artism from Members of the Autistic Self-Advocacy Community
Revisions and edits aside, the majority of my foregoing description of the Artism Ensemble and its philosophy was written prior to the group’s Society for Disability Studies (SDS) Conference concert in Orlando on June 26, 2013. In the aftermath of that concert and still today, I stand by what I wrote in most every respect. However, an enlightening exchange that I had with several autistic self-advocates a couple of days (p. 300) after the show profoundly impacted my subsequent assessment of not just the concert itself, but also the project overall and possibilities for its improvement and development moving forward. This same exchange also heightened my appreciation for the challenges of doing applied ethnomusicology generally, since determining how and for whom such research is being put “to practical use” is inevitably a complex matter with high stakes attached.
The Artism Ensemble concert at SDS 2013 was the group’s most ambitious and complex undertaking to that point. We had previously performed about a dozen concerts, ranging in setting from open-air arts festivals to large concert halls and from state museums to street fairs. We had never traveled beyond our home-base region of Tallahassee/Leon County, however, and had certainly never experienced the kind of visibility that performing at the pre-eminent international conference on disability studies promised to provide.
Any musician knows that taking a band on the road is challenging. There are myriad logistical details to attend to, from transportation and accommodations, to loading equipment in and out of the performance venue, to sound and lighting and other technical matters, to maintaining a collective spirit of camaraderie, patience, and enthusiasm. Take a band on the road in which the featured players are children, and beyond that children with the special sensitivities and proclivities associated with autism, and the venture’s complexity and possibilities for difficulty grow exponentially. Add to that the complicated audience dynamics of a body such as the Society for Disability Studies, in which most of the members are themselves disabled individuals collectively requiring a wide range of accommodations, and it is easy to imagine a situation in which any of a number—and indeed any number—of things might go wrong.
Yet nothing did, or so it seemed. All six cars in our motley caravan made it through the labyrinth of toll booths, outlet malls, and theme park discount ticket outlets between Tallahassee and Orlando in good time and without a hitch. Our complimentary hotel rooms were nicely acquitted and ready and waiting for us upon arrival. The kids—and the adults, too—were in good spirits and very excited about the show. We had an excellent and efficient dress rehearsal, leaving us ample time for a leisurely dinner before the concert. Everyone on site—the sound and lighting technicians, our SDS host officers and volunteers, the interpreter team assigned to “translate” our concert into sign language (an amazing site to behold)—was as welcoming, competent, and accommodating as we could have hoped for.
The concert itself was a great success. Our program consisted of five main selections, all composed or co-composed by the children in the group: “Steel Drum Madness,” by Coffeebot; “Life of Goodness,” by E. S.; “The Beat Song,” by E. S. with Carlos Silva; and “The Nightmare Before Christmas” (based on the poem and movie of the same name by Tim Burton) and “Purple Eggs and Ham,” by Mara (under the stage name “Mara-I-am” on the program). These were followed by a free improvisation, jam session performed as an encore, during which an open invitation was made to the audience to sit in with the band; several audience members came onstage and joined in on various available (p. 301) percussion instruments while others (e.g., in wheelchairs) had instruments brought to them and participated from their seats.
Each of the pieces came off well; all 12 members of the band expressed that this was probably the best concert we had ever done. The audience, about 150 strong, was receptive and enthusiastic. There was a special feeling in the room, perhaps issuing from the fact that this supportive community of scholars and disability rights advocates had an unprecedented depth of comprehension and appreciation for what we were doing. We received a standing ovation, and then there was the aforementioned post-concert Q&A session, which was so enlightening, and in which Mara in particular really shone.
An evaluation questionnaire was distributed to audience members, per our standard protocol under the NEA grant. The responses were overwhelmingly positive. The concert was deemed “Excellent” (1) or “Very Good” (2) by 95% or more of the respondents on every question, and the free comments were almost uniformly enthusiastic. The only criticisms per se were that one respondent felt that “the music this band plays seems to heavily represent the higher end of the [autism] spectrum”18 and another found that a couple of the comments of one of the band members (i.e., an adult professional musician) seemed “awkward” and this audience member “didn’t care for” them. Otherwise, all respondents indicated that they had liked the music very much, had been inspired by the concert, had learned much of value regarding the abilities of autistic children, and so on.
I had no specific feedback of which I was aware, however, from any autistic individuals who had attended the concert, and this, as much as anything, was something I had hoped might emerge. So two days later, during an open Q&A session following a fascinating conference panel titled “Intersectionalities in Autistic Culture(s): A Discussion Instigated by This Posse of Autistics and Friends” (Grace et al., 2013: 42), I took advantage of the opportunity to solicit feedback on our concert.
“Were any of you at the Artism Ensemble concert the other night?” I asked. Several of the panelists, as well as a number of audience members, indicated they had been. “So I was wondering,” I continued, “you know, we’ve never had the opportunity to play for and get feedback from members of the autistic community, and I’d be really interested in hearing your honest assessment of the show.”
One of the panelists, the autistic self-advocate Zachary (Zach) Richter, veritably leapt out of his seat to the center of the room.
“Honestly,” he said, “well, I’m going to keep this polite, because you don’t want to hear the impolite version—”19
“That’s OK,” I interjected. “Don’t spare my feelings. I really want your honest opinions.”
“Well, I’m going to keep it polite. It’s better to keep it polite. You know, I’ve seen you around the conference, Dr. Bakan”—
“Please, call me Michael.”
“No, I’ll call you Dr. Bakan—and I wanted to say something to you, but I didn’t because I didn’t want to be rude. But since you brought up the question, honestly, I found it offensive.”
(p. 302) It was a stinging criticism, and of an intensity that quite frankly surprised me, but I managed to maintain my poise.
“How so?” I asked, bracing myself for the response.
Zach proceeded to present an incisive and thorough-going critique. Other panelists and audience members contributed occasional comments, too. These included the panel moderator, Professor Elizabeth J. Grace of National-Louis University, who is autistic, as well as another panelist, Allegra Stout, who is not autistic but is deeply involved in the autistic self-advocacy movement.20 It was a lively discussion, with expressions of unanimity of opinion on a number of issues, dissension on others. The following is my own summation of the main critical points raised, which I present with advance apologies for inevitable oversimplifications of a richly nuanced and impassioned exchange:
• The concert, with its emphasis on percussion and amplified instruments, demonstrated a lack of sensitivity to the sensory challenges of many autistics.
• My failure to instruct the audience to use “silent applause” (e.g., waving of hands overhead) rather than clapping to express their appreciation was another instance of inattentiveness to autistic sound sensitivities.
• The absence of any autistic adults in the group—or even of consultation with autistic adult musicians in connection with the project—was deemed problematic for several reasons:
• It deprived the children of the opportunity to have adult collaborators and mentors who, like themselves, were autistic.
• It implicitly propagated the pervasive mythology that autism is a “children’s disease,” in turn playing into a common neurotypical tendency to infantilize autism in ways that sabotage autistic self-advocacy initiatives.
• It inscribed and reinforced a pattern—real, illusory, or otherwise—of the agency of autistic children being constrained by the values and sensibilities of neurotypical adults (myself most especially).
• The absence of explicit political activism and engagement in the manner of presentation diminished whatever potential may have existed for advocacy in support of autistic and broader disability rights causes.
The Scourge of “Autism Awareness”
There was an additional criticism levied by Richter as well, one that did not pertain to the concert performance itself, but rather to an unfortunate item included on the audience questionnaire:
In terms of promoting autism awareness, this concert was:
(2) Very Good
(p. 303) “Why are you asking about autism awareness?” Richter inquired of me, a pained expression on his face. “That’s wrong. It should be about autism acceptance! Have you received funding from Autism Speaks? That’s what I think, and I’m angry because SDS told us this was going to be a safe space for autistics, and then they bring in your group and the whole autism awareness thing, and it’s like an Autism Speaks agenda and that makes me—us—mad. I’ve talked to the conference organizers and told them this shouldn’t have happened, and I’ve blogged about it, too.”
This was a nightmare unfolding. I felt defensive, under attack, and yet I could easily see how the chain of events leading up to this moment had resulted in its occurrence, and how from Richter’s perspective the charges being raised against me and the whole Artism enterprise were well-founded. A loud silence blanketed the room in anticipation of my response.
“First, Zach, let me assure you, we have received no funding or support from Autism Speaks and have no affiliation whatsoever with that organization,” I began. “Second, I feel absolutely terrible. I didn’t know how offensive the phrase ‘autism awareness’ was until now, nor did I know the history behind it that contributed to making it so. You are 100% right, and as soon as I leave this session I’m going to remove that phrase from the questionnaire and free myself of any association with it in everything I write or say from now on. I want to do this thing right. I’m really sorry.”
“We can help you with that,” Dr. Grace chimed in. “It’s easy. If you send me that questionnaire, I can go through and make edits to get rid of that kind of offensive language.”
“Thanks. I’d really appreciate that, and I’m sorry for taking up so much of your discussion time on this topic.”
“That’s OK,” she assured me, “but we do need to move on now.”
Addressing the Criticisms
The feedback on the Orlando Artism concert that Zach Richter and his fellow autistic self-advocates provided has proven to be invaluable. It has inspired me to think about the Artism Music Project, and more broadly the applied ethnomusicology of autism, in new and challenging ways. Mainly, at this stage, it is making me think long and hard about what in Artism is currently working and what is not. What about the project should be retained, adapted, developed, and nurtured, and what should be tossed, expunged, or at least radically reconfigured?
These are practical questions, not theoretical ones. They address applied ethnomusicology concerns, not intellectual abstractions. And yet, as applied ethnomusicology endeavors consistently teach us, there is no dividing line between the practical and the theoretical, the applied and the intellectual. They always inform and penetrate one another, for every practical decision both reflects the conceptual apparatus involved in its making and affects the conceptual horizons that emerge in its wake.
(p. 304) If we are to endeavor to improve Artism, our best first step is to respond directly, dispassionately, and honestly to the criticisms that have been directed toward it by autistic self-advocates. The following is at least a preliminary effort to do precisely that:
• Criticism: Failure to accommodate the sensory challenges of many autistics, especially their sensitivity to loud sounds.
• This must be addressed, both within the group itself and in our mode of public performance. Mara has on a few occasions said that the tendency toward loud playing in the group, especially in the compositions of the two boys, Coffeebot and NICKstr, sometimes overwhelms her. There have been occasions when she has become distressed in rehearsals that now, in retrospect, I would attribute to her discomfort at the sheer loudness of the environment. E. S. does not speak verbally about sensitivity to sounds, but she does often cover her ears during rehearsals, which may—or may not—signal that she is experiencing discomfort or displeasure due to loudness.21 The challenge here is that the two boys in the group love to play loud, sometimes really loud, and the philosophy of letting the child lead, especially in their own pieces, creates a dilemma as to whether they should be free to express themselves as they choose or should be reined in (and if the latter, by whom). In the end, however, we will probably do best to heed the advice of Jim Sinclair, who advocates for community norms that protect members with sensitivities from overstimulation (Sinclair, 2012 : 43). We can all learn to play more softly without ultimate compromise to our expressive potential, and this will need to be a goal for the ensemble in the future, for the sake of certain of its members as well as prospective audience members with heightened sensitivities to sound.
• Criticism: Failure to instruct the audience to use “silent applause” rather than clapping during the performance.
• This deserves prompt attention. Encouraging future audiences to adopt the practice of applauding silently rather than clapping, which is standard practice at autistic gatherings such as Autreat, will enable us to avoid disturbing autistic or otherwise sound-sensitive audience members. It will additionally provide a great teaching moment on neurodiverse practices and values for our other concert attendees.
• Criticism: Absence of adult autistic musicians in the ensemble.
• This, too, warrants an active response. If we claim to be a neurodiverse ensemble and to model neurodiversity by way of example, we need to raise the stakes of what is meant by such claims. We have to open ensemble membership not to just autistic adult musicians, but also to autistic “non-musicians” and neurotypical children. The present demographic of the ensemble is too categorical: autistic children, neurotypical adults. It is no wonder that autistic self-advocates would take issue with this arrangement, and it is imperative that this structure be remedied.
(p. 305) • Criticism: It appears that the children are not really the composers of the pieces credited to them.
• This is a complex issue. I can attest to the fact that the children have a great deal of autonomy in conceptualizing, exploring, making manifest, and shaping their own musical ideas on their own terms within the Artism context. That said, this is an improvisation-driven ensemble, and the collective improvisation process inevitably involves significant “co-creation” on the part of other members of the group. The staff musicians, being the experienced and professional players they are, have the capacity to strongly influence the music’s direction as it emerges in the course of improvisation, whether intentionally or not. Moreover, since they are often the main (though not only) players of melodic and harmonic instruments, their impact on the shape and development of the children’s compositions can be great. My overall impression has been that the children tend to appreciate and value these musical contributions of their adult collaborators; indeed, they have often stated this to be the case. Moreover, they are generally not averse to speaking (or otherwise communicating) their displeasure when they do not approve of where their music is being taken by the staff musicians. I believe that on this level we are actually doing quite well (though we can always do better) and that the issue here may be more one of impression than reality.22
• Criticism: Absence of political activism in the concert diminished its advocacy potential.
• While I appreciate and respect this charge, I do not necessarily agree with it. It is my belief that the strongest “political” statement the Artism Ensemble can make on behalf of autistic advocacy, agency, and self-determination is the one that keeps the music in the foreground first, last, and foremost. Play is important, joy is important, shared endeavor is important, and music is important. If autistic and non-autistic people can share in the pleasurable co-creation of culture and music together through a project like Artism, and if other people get to share in that experience as well, whether as listeners or co-participants, then everyone benefits, consciousness is raised, mutual acceptance is cultivated, and good work is done. Sometimes, an absence of explicit political activism is to the advantage rather than the detriment of effective advocacy. Artism performances would seem to hold that potential, though different performance contexts will surely influence whether or not that is the case in the future.
Mara Speaks (Again)
Back to Mara, who is once again spinning in her favorite chair. “… and of course the Autism Ensemble [sic] is not a cure,” she tells me. “I don’t treat it like a cure, because it isn’t, and if you call it a cure I will disagree with you. It’s simply the kind of way you can (p. 306) calm down and, you know, help with the bad parts of autism without restricting the good parts.”
I ask her what she means by that.
“Well, what I mean is, a lot of famous people were autistic or Asperger’s or something,” she explains. “[My] Mom tells us that people like Einstein and Marie Curie and a bunch of other famous people had it. Mom tells me that a lot of people who have autism and Asperger’s can be more creative and insightful than other people, insightful in a way, you know, where they’ve experienced a lot of the emotions that they’re either writing about in stories, or plays, or poems; because a lot of people who have autism can swing between different emotions really quickly. I’m like that. Someone will just say one word and I become like a stereotyped emo. (Once again, if you haven’t heard it before, an emo is one of those really sad, dark people. I just go around telling people ‘Life is pointless’ when I’m like that.) Of course, the bad parts in my situation are that when I get angry, I get ANGRY!! I mean, like, yelling, slamming-door angry. Of course, I never get physical angry. I don’t punch or hit or bite, though I have bitten someone, but that was in third grade. What I meant by helping with the bad parts but not restricting the good parts is that Artism kind of helps with my anger issues without restricting my creativity, and that’s all I got to say.”
“Well, OK,” I say, pausing and trying to figure out a way to get Mara to expand on that topic just a bit more. “I know we’ve been at this for a while, but can you just tell me a little bit more about how that works?”
“It’s the fact that I’m allowed to bang on drums for a while—and any instrument I want (as long as I don’t break it or it’s not meant to be banged)—without anybody telling me I’m supposed to do it this way, or I’m supposed to do it that way, or I’m supposed to put this there or that THERE, or I’m doing it wrong.”
“Is that the most important one,” I ask, “the one about not being told you’re doing it wrong?”
“Why is that so important, not to be told you’re doing it wrong?”
“Because I’m told that every day. I want a break from it!” She laughs. “Spinny chairs! … It’s just nice being there with other people without them telling me what to do, or just jabbering about all the things they can do that I can’t… .”
“If Artism continues next year and you stay in the group,” I now ask Mara, shifting gears so as to test out some of Zach Richter’s proposals for the group’s future development, “what would you think about having an adult musician with autism join the band?”
“That would be good actually; it sounds pretty cool. I’d like that.” Mara pauses and redirects her attention. “I like spinny chairs, paper clips, wolves, and a bunch of other things.”
“What do you think it would add?”
“It would add to themselves and to us. It would be cool seeing an adult with autism in the group instead of just kids with autism. And the autistic adult would be happy to see so many autistic kids being happy too.”
(p. 307) “Are you an autistic kid or a kid with autism?”
“It doesn’t matter. It’s like asking a zebra, ‘Are you black with white stripes or white with black stripes?’ ”
“Would it be good to have kids who weren’t autistic in the group as well?”
“What do you mean?” Mara asks, looking perplexed, as though the question doesn’t even make sense. “Well, why not?!” she finally exclaims. “Does it matter? I mean, just because it’s called the Artism Ensemble doesn’t mean we only have to have autistic kids in there.”
“Did it ever bother you that that was the way it was?”
“No, not really. We’re all just kids in the end. I mean, that’s the whole point. We’re all just kids in the end. Who friggin’ cares whether we’re autistic or not? Why does it matter?”
Mara is wise beyond her years. Her ideas and insights cut to the core of many current autism and neurodiversity issues and debates.
“Who says autism is a bad thing?” she asks rhetorically. The answer is that a great many people do, indeed the vast majority. Yet Mara, along with autistic self-advocates such as Bascom, Walker, Sinclair, Ne’eman, Winter, Richter, and Grace, begs to differ: autism is not a bad thing, it’s just a thing—a difference, not a deficit; a culture, not a disorder.
There “is no cure [for autism]. There really isn’t. It’s just there, wound into your personality,” Mara tells us unequivocally, again echoing the convictions of most autistic self-advocates. No wonder these people decry the extraordinary amount of time, effort, expertise, and expenditure being poured into autism research and interventions aimed at their ostensible normalization, remediation, and cure, into what they equate with efforts at their erasure from a society that does not value or want them, as they are and for whom they are.
“Who friggin’ cares whether we’re autistic or not? Why does it matter?” Mara challenges us to wonder. Why indeed, for if the neurotypical majority could learn to better listen and respond to the autistic neurominority, to attend to what autistic people say they need and want, rather than assuming to know what’s best for them, true neurodiversity would become a real possibility. Then whether you’re autistic or not wouldn’t have to matter so much, or it would matter in different, more productive ways. Working together, we can collectively forge a path away from stigma, exclusion, and disenfranchisement, and toward acceptance, inclusion, empowerment, and agency for all.
“It’s just nice being… with other people without them telling me what to do, or just jabbering about all the things they can do that I can’t.” Poignant words again from Mara, and words that are hardly exclusive to autistic people; the relevance of such sentiments is arguably universal. Does it not behoove all of us to create, nurture, and sustain (p. 308) environments in which being together with others in this way can be expected, counted on, and assumed, whether you happen to be black or white, Muslim or Christian, autistic or neurotypical? Awareness is not enough; acceptance is the necessary but not sufficient condition for getting us to where we need to be.
Music provides a powerful vehicle for asserting and reifying the qualities of human dignity, inclusion, acceptance, and neurodiversity that Mara, along with an ever growing chorus of autistic self-advocates, champions of disability rights, and activist scholars across multiple disciplines, are promoting. Ethnomusicology, with its moorings in ethnography and musical co-participation, offers a productive theoretical foundation from which to move forward. Applied ethnomusicology, with its emphasis on putting ethnomusicological research to practical use, sets the merging of productive musical practice, ethnographic epistemology, and social activism in motion. An emergent ethnomusicology of autism is thus an arena of great potential, whether in its possibilities for exploring new horizons of musical sociality and agency, expanding the horizons of ethnographic possibility, or serving the interests of autistic self-advocacy, disability rights, and neurodiversity.
The path is not an easy one. Missteps and pitfalls are inevitable: the prospect of garnering resentment from the very people on whose behalf we presume ourselves to be working is real and palpable; the kinds of understandings we develop, programs we enact, and messages we send may well play into the hands of makers of agendas and images we aim to combat. Indeed, abundant opportunities exist to make things worse rather than better, regardless of our intentions. We may stumble, as I did at the Society for Disability Studies conference. We may propagate the very essentialisms we abhor, for example, in the aftermath of an Artism concert in 2012, when I overheard a departing audience member saying something to the effect of, “Oh, wasn’t that special; it’s so nice that those autistic kids get to do something fun with music since they surely couldn’t play in a real band or orchestra.”
“No one would claim perfection” in such work, Jeff Todd Titon presciently warned in 1992, since “action is risky, and sometimes one makes mistakes; but consider the alternative, non-action” (Titon, 1992: 320). Indeed, the stakes of taking action are high, but the consequences of not taking action are higher still. The risks are always there, but they are more often than not worth taking, so long as we approach our endeavors judiciously, intelligently, in a well-informed manner, and with compassion and vision. Most important, we must learn to listen and to listen well, even to those who may find it hard to communicate with us in ways that we can readily understand. That is a challenge that should not be beyond us. We are, after all, musicians, and ethnomusicologists; it’s what we do.
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(1.) For alternate definitions and substantive discussions of related issues in applied ethnomusicology, see also Titon (1992), Sheehy (1992), Alviso (2003), Harrison, Pettan, and Mackinlay, eds. (2010), and Harrison (2012).
(2.) All of the participating children and families in Artism were formerly participants in the ensemble’s progenitor, the Music-Play Project, or MPP, as well. They were originally recruited for MPP through the client registry of the Center for Autism and Related Disabilities (CARD) at Florida State University and became involved with Artism when I put out an open call to MPP alumni in 2009 regarding this new, related project.
(3.) The intersectionality of autistic and child identities in the Artism Ensemble is not addressed explicitly in this chapter for reasons of space and scope. Exploring such intersectionality is of great potential significance, however. Ethnomusicologically oriented, ethnography-informed approaches to the study of children’s musical cultures, as exemplified, for example, in publications by Campbell (2010), Marsh (2008), and Gaunt (2006), offer valuable models and possibilities relative to future projects and studies on the musical lives of autistic children.
(4.) There is continuing debate on the relative pros and cons of using person-first language in discourses on autism. As Elizabeth Fein notes, “In many disability contexts and communities, using ‘person-first language’ (i.e. Steve is a person with autism) is considered to be more respectful than using language that characterizes that person according to their condition (i.e. Steve is autistic or Steve is an autistic). However, in the autism world, this formulation of the relationship between person and condition is not so straightforward. Many in the autistic self-advocacy community have voiced a strong preference against person-first language, arguing that autism is not, in fact, separate from themselves in the way such language implies… . [I]n the absence of a single good answer to the thorny question of respectful language,” Fein states, “I have chosen to use both of these formulations and alternate between them as seems appropriate for the context. Whenever possible, I follow the preferences of the person to or about whom I am speaking” (Fein, 2012: ix). I adopt a similar approach here.
(5.) For a range of approaches in music therapy, see Nordoff and Robbins (1977), Bruscia (1987), Clarkson (1994), Edgerton (1994), Ruud (1998), Aigen (2002), Stige (2002), Kern (2004), Pavlicevic and Ansdell (2004), Whipple (2004), Walworth (2007), Gold (2011), Reschke-Hernández (2011), and Simpson and Keen (2011).
(6.) This definition of “therapy” is from Oxford Dictionaries online: http://www.oxforddictionaries.com/us/definition/english/therapy (accessed May 28, 2014).
(8.) “Mark” is a pseudonym, as are the identifying names used in this chapter for all child participants in the Artism Music Project with the exception of Mara Chasar. Both Mara and her parents specifically requested that she be identified by her real name in this and other publications related to this research.
(9.) In the Diagnostic and Statistical Manual of Mental Disorders, 5th edition (i.e., DSM-5) (American Psychiatric Association, 2013), the various separate “disorders” of the autism spectrum, including Asperger’s syndrome (Asperger disorder), have essentially been collapsed into a single diagnostic category of Autism Spectrum Disorder (ASD).
(10.) As for Mark himself, he recently told me that me he has no recollection of the events of that evening and explained that “[i]t’s actually not that big of a deal to me, because I’m not that into music now anyhow” (personal communication, August 2, 2013).
(11.) The original 2011 grant and two renewals of it (2012, 2013) were federally funded by the National Endowment for the Arts and administered by the Florida Department of State’s Division of Cultural Affairs. Additional sponsorship of Artism has come from the Florida Council on the Arts and Culture, Remo Inc., the Council on Culture and Arts for Tallahassee/Leon County (COCA), Temple Israel (Tallahassee), the Society for Disability Studies, the Tallahassee Youth Orchestras, and the Florida State University’s College of Music, College of Medicine, Center for Autism and Related Disabilities, and Autism Institute.
(12.) See note 9 above regarding how what were formerly recognized as multiple “disorders” of the autism spectrum have been collapsed into the single diagnostic category of ASD in DSM-5.
(13.) The anthropological study of autism is a growing field in which significant contributions are being made to epistemological and methodological transformations of autism research and discourse. See also Ochs et al. (2004), Grinker (2007, 2010), Solomon (2010b), Prince (2010), Sirota (2010), Sterponi and Fasulo (2010), Bagatell (2010), Solomon and Bagatell (2010), Brezis (2012), and Fein (2012).
(14.) Loud Hands: Autistic People, Speaking (2012) is an important recent addition to the growing corpus of published works addressing issues of autism and living with ASD that have been authored or co-authored by autistic people. See also Williams (1992), Lawson (2000), Shore (2003) (of additional interest on account of the author’s professional status as a musician and music educator), Miller (2003), Prince-Hughes (2004), Biklen (2005), Ariel and Naseef (2006), Tammet (2007), Robison (2007), and Mukhopadhyay (2011 ), among others. Numerous documentary films, blogs, websites, and other media also contribute to the increasingly prominent presence of autistic voices in ASD discourses.
(15.) Straus’s work intersects disability studies, music theory, and musicology. He is central to a cohort of scholars currently working in these areas. Representative works in the emergent literature on music and disability that engage autism-related subjects include Straus’s book Extraordinary Measures: Disability in Music (2011) and his co-edited volume (with Neil Lerner) Sounding Off: Theorizing Disability in Music (Lerner and Straus, 2006). That volume includes autism-related chapters by Headlam (2006), Jensen-Moulton (2006), and Maloney (2006). Of related interest, see Lubet (2011) and Marrero (2012). Of more general relevance to the epistemological orientations and practical ramifications of different models of disability in disability studies (e.g., medical, social), see Davis (2013a, 2013b, 2013c), Shakespeare (2013), Siebers (2013), Garland-Thomson (1997, 2013), Rioux (1994), Titchkosky (2007), Carlson (2009), Ralston and Ho (2010), and Silvers (2010); on autism specifically, see Nadesan (2005), Murray (2008), and Osteen (2008).
(16.) There is, of course, an inherent flaw in this comparative analogy. Balinese musicians were doing what they do long before I arrived in Bali as an ethnomusicologist in the 1980s, whereas the children in the Artism Ensemble did not know each other, let alone become co-creators of their own musicultural world, until after the program and the E-WoMP were created. I, in collaboration with other non-autistic adults, came up with the idea of the project, made the E-WoMP, and implemented Artism. Therefore, I may rightly be accused of having essentially created the ethnographic field site that I now visit and research. While recognizing that there is some irony in this situation, ethnographically speaking, I hold to the conviction that a large measure of “ownership” of the E-WoMP space, and of Artism’s musical and social processes and priorities overall, has been claimed and maintained by the children in the group.
(17.) “Joobai I,” by E. S., may be accessed at http://www.youtube.com/watch?v=2ZVHiDQJLLo; “Steel Percussion,” by NICKstr, at http://www.youtube.com/watch?v=SjkrjHf_cSI. Both performances were recorded during a concert at the Florida State University Museum of Fine Arts in the spring of 2013. A rehearsal video of “Purple Eggs and Ham,” by Mara, may be accessed at http://www.youtube.com/watch?v=CltqzvA96-E. Note that this video commences with an incomplete take. The full performance starts 40 seconds in, immediately after the point at which one of the children (Coffeebot) is heard saying “Take two.”
(18.) This is a valid observation. Three of the four children who performed in the concert had diagnoses of Asperger’s syndrome or high-functioning autism (HFA), and this was a major factor in the group’s approach and profile on multiple levels. It is perhaps worth noting, however, that in the Music-Play Project, which enrolled more than 30 children in its programs from 2005 to 2009, the span of different ability and diagnostic profiles along the continuum of the autism spectrum was much larger than it has been in Artism. Several of the participating children in MPP were essentially nonspeaking individuals, for example.
(19.) This is not an exact transcript of the conversation. My reconstruction effort here is based on notes I took during the panel, journaling I did in its immediate aftermath, and memory-based recollections. I apologize and take full responsibility for any inaccuracies or misrepresentations.
(20.) I am grateful to Allegra Stout for consulting with me on the present work and for recommending the book Loud Hands, which has profoundly affected my perspectives on autism.
(21.) Since E. S. also frequently covers her ears in other settings, including quiet ones, it is difficult to determine whether this is a sound sensitivity–related matter in her case. This has been an ongoing topic of discussion with her parents and has been explored by the ethnomusicologist Elyse Marrero in her Master’s thesis, which focuses on E. S. and her music (Marrero, 2012).
(22.) I hasten to add, however, that my Artism staff colleague Michelle Jones takes a more critical stance on this matter than I do. She contends that there is a tendency for the staff musicians to “dominate” the course of musical development at times. She also notes that the current arrangement, wherein melodic and harmonic instruments are principally the province of the staff musicians while the children (and parents) mainly play percussion, creates an “imbalance of power” that favors the adult players with professional musical experience.