Tag: disability

Rhapsody in Discomfort

A chronic pain assessment form

I’ve been a violinist for forty years and I have made a living from it since completing school twenty years ago. I’ve also been afflicted with chronic neurological Lyme Disease and co-infections for thirty-three years, and boy oh boy, does it get in the way. So, how do I deal with it, you ask?  Well, write a trio about it, of course.

I started learning the violin just before my fifth birthday through a Suzuki program in New Jersey. My teacher was Louise Butler, a Suzuki guru who studied with the Sevcik student, Scott Willitts. (I have autographed photos of Willitts, Suzuki, and Sevcik on my walls, among many others.) Playing the violin was fun and easy for me in those days. Mrs. Butler kept jumping me up to the next class, like skipping grades, and she eventually encouraged me to audition for the pre-college division at Juilliard. I refused; Saturdays were for baseball, skateboarding, and general mischief. I then studied with Janina Robinson, a Persinger student (autographed photo on the wall), Lewis Kaplan, a Galamian student (if you have an autographed photo of Galamian, please give it to me), Hall Grossman at Interlochen Arts Academy, Linda Cerone at Cleveland Institute of Music, then Fritz Gearhart at University of Oregon.

When I was about twelve, the difficulties began. First it was insomnia and depression. Pain showed up in my left shoulder at Chautauqua when I was fourteen, obviously from playing the violin so much. At fifteen, while the depression and insomnia intensified, the pain migrated to my neck and then down my spine. My parents brought me to every doctor they could find: chiropractic, physical therapy, acupuncture, Feldenkrais, Alexander Technique, and countless orthopedists, one of whom wanted to operate on disks L1 and L2, because they appeared to be deteriorated. It wasn’t a sure thing, so we chose not to. When I was sixteen, I was wearing a giant hard plastic brace that strapped around my abdomen from armpits to waist and had a team of shrinks prescribing pills. Playing the violin was no longer fun or easy. I started to feel like I could never get warmed up; stiff muscles got in the way of accuracy, and playing became laborious. When I’d perform, I’d shake all over, which my peers and teachers attributed to being nervous. The violin had long since become my raison d’être, so I forged ahead.

We found a notable doctor in New York City who’d written several best-selling books about how back pain was usually psychogenic. I had a few meetings with him and he said I fit the bill; I had Tension Myositis Syndrome. I’d received a PTSD diagnosis a few months earlier because of an accident my brother had, so this made sense. He said deteriorated disks are common and usually not painful. The protocol? Acknowledge that the pain was created by the unconscious mind to distract the conscious mind from the bad things that are too painful to face and do it regularly enough that the concept becomes fixed in your unconscious. We believed him.

Over the next decade or so, my back pain got worse and worse, as did the other symptoms. In my twenties, I developed tendinitis in my left wrist, as so many violinists do. I saw several doctors and was told to stop playing for two weeks, which was heart-breaking. After two weeks off, not only did the pain not subside, but it then showed up in the right wrist. At this time, I was living in Sacramento, playing concertmaster of the Sacramento Philharmonic and California Musical Theater, teaching at UC Davis, and running Sacramento School of Music, which I’d founded. I saw lots of doctors at the hospitals of UC Davis, Stanford, and UCSF; spine centers, sports medicine, pain management, hand surgeons, etc., etc. Many didn’t know what to tell me and passed me off to somebody else. Others blamed it on stress. One doc told me that I had a stenosis in my neck which might be causing the issue.

I decided to call up my former college teacher, Linda Cerone, for advice. The next day, she informed me that I could come and see the neck surgeon in Cleveland who’d recently operated on the concertmaster of the Cleveland Orchestra, and that he’d make room for me to come any day the following week. That’s exactly what I did. This doctor agreed with the stenosis diagnosis but said operating may or may not relieve the pain. I then flew to Chicago to see a very notable doctor at Northwestern who was famous for helping musicians. She said sure, I had tendinitis once, but it’s now a chronic pain disorder originating from the mind. Following that, an osteopath in California did some acupuncture on my neck and fifteen minutes later the pain in my wrists began to burn, then my arms went partially numb.

By this point, from age fifteen to twenty-nine, I’d probably seen over thirty practitioners for these chronic ailments that never seemed to heal. Most of them mentioned stress or other psychological conditions as the culprit and/or excessive violin playing. A few of them threw around the vacant term, “fibromyalgia.” Bewildered and scared, I decided to stop playing the violin until I healed. I found a body worker in California who was popular with musicians. His diagnosis was the same, so I started weekly sessions with him, combining massage with his arm-chair psychology. Whenever I was in pain, I was instructed to identify what my headspace was at the time, acknowledging that I’d created it myself.

During this time off from playing, I continued to teach. The Sacramento Philharmonic was very supportive, giving me all the time to get better that I needed. A smaller orchestra that I also played concertmaster for, was not. The conductor of that orchestra fired me because I missed a year of concerts. I filed a grievance with the musicians’ union and got the job back. After twenty months of not playing the violin and experiencing no improvement on my pain, I needed to go back to work. Most places were happy to have me back and I was thrilled to be there. That little orchestra was different. While I had unanimous support from the musicians, the conductor really stuck it to me: avoiding eye contact, refusing bows after solos, adding spontaneous solos the day before the concert to throw me off, and playing other games. I withstood this for the next ten years, still not knowing what was really wrong with me.

Throughout my thirties, all the symptoms increased. I developed tendinitis in my elbows and my knees and neither healed. The pain and muscle spasms from those injuries increased and migrated, eventually meeting up with the pain and muscle-spasms in my back and neck. I developed vertigo, brain fog, and tinnitus. One day, when I was thirty-seven, I was standing in the bathroom, too exhausted and dizzy to get in the shower. I started thinking about how easily I’d been injuring myself and how nothing ever seemed to heal. That’s when it hit me; I must have a systemic disease and this psychogenic diagnosis was bullshit.

I went to my doctors at Kaiser and exhausted all the available options. They tested me for every auto-immune disease they could. There was one day that they took out eighteen tubes of blood. The result was always, “good news, you’re perfectly healthy!” My dad said he thought I might have Lyme Disease. When I mentioned it to the Kaiser doctors, they refused to test me for it because I’d never found a tick on myself. I kept insisting, so they finally tested me. Negative. More good news.

A couple more years wore on, riddled with fatigue, depression, pain in every inch of my body, vertigo, headaches, brain fog, rashes, testicle pain, tinnitus, gut issues, metabolism issues, diarrhea, light sensitivity, sun intolerance, allergies, nerve pain, numbness, etc. Some days I could barely move. I had trouble getting places, especially in the morning.

One day, when I was thirty-nine, my friend Robin said she’d mentioned me to her nutritionist. The nutritionist suspected that I had Lyme Disease and encouraged me to call her. This doctor explained that the mainstream Lyme test, which Kaiser uses, is terribly outdated, often showing a false negative. She administered the newer tests and Eureka, I was positive for several infections! To be sure, I confirmed this diagnosis with Lyme experts up and down the West Coast. They all agreed it dated back to when I was about twelve years old. It was amazing to know that all along, my collection of ailments was caused by this disease. I’d previously been trained to believe that I’d caused all this myself; for decades, when I felt pain or other symptoms, it was accompanied by guilt and self-loathing, and it wasn’t easy to undo this.

A rendering of the Lyme disease spirochete, Borrelia burgdorferi.

The Lyme disease spirochete, Borrelia burgdorferi, is an obligate parasite that cycles between ticks and vertebrate hosts. In this rendering, immunofluorescent antibodies were used to identify spirochetes that express outer surface protein D (yellow and red) and were merged with an image of all the spirochetes labeled with an anti-B. burgdorferi antibody (green). Credit: NIAID (via Flickr).

Lyme Disease specifically refers to Borrelia burgdorferi, a bacterial infection contracted from a tick bite. Lyme is also an umbrella term for the forty-five other infections that are often contracted along with Borrelia. In addition to Borrelia burgdorferi, my tests showed Ehrlichia, Bartonella, Babesia, Relapsing Fever, Epstein Barr, and others. Each Lyme victim has a unique collection of these infections that wreak havoc on the individual’s immune system, causing dozens of symptoms that are often misdiagnosed.

We’ve all heard about the bulls-eye rash followed by a few weeks of antibiotics. Well, those are the lucky people. Many victims never know they were bitten, developing symptoms slowly over many years, with doctors attributing them to other conditions. When these infections go untreated, they become chronic. The bacteria burrow deeply into the victim’s muscles, nervous system, gut, and brain, protecting themselves with a biofilm and functioning like a virus. Standard treatments include supplements, detoxing, and antibiotics. There are also more experimental and invasive treatments, some of which aren’t legal in the United States. In some cases, these treatments bring short or long-term relief to patients, while many of us go on with little or no relief. Insurance companies still reject the existence of chronic Lyme because the treatments are expensive and often endless.

For five years, I tried everything my Lyme doctors wanted me to do, none of which were covered by insurance. There were days when I would take up to eighty pills. I developed “pill fatigue,” which caused me to gag the instant a pill touched my mouth. I tried various elimination diets. Towards the end of these efforts, I was on three intense antibiotics simultaneously for about nine months. An interesting thing happens when you attack Lyme with antibiotics. The Lyme actually fights back, causing the patient’s symptoms to grow exponentially worse. It’s called “herxing,” coined by Dr. Herxheimer. For most patients, this lasts a few weeks, but for a few of us, it lasts indefinitely. I did four different stints of antibiotics. Each time, the “herxing” never subsided and we had to abandon the treatment because it became dangerous. I did all the standard treatments over the course of five years, then a little over a year ago, I gave up. I decided to live my life the best I could with the diseases until a better treatment or cure is discovered.

For the past fifteen years, I’ve been living in Berkeley. I’m still Concertmaster for the Sacramento Philharmonic and Opera, Concertmaster for West Edge Opera, Principal 2nd for the Berkeley Symphony, I teach violin at UC Berkeley, and I play much of the season with SF Opera. I play an enormous amount of new music. Every note I play hurts, though. Every step I take is awful. Every time I turn my head or redirect my eyes, the room spins. I sleep horribly, it takes me an hour to get out of bed, and some days I can barely walk. The disabled placard in my car helps a little. All the shakes I get when I perform are because Lyme is entrenched in my nervous system. When the “fight or flight” kicks in, which it does for all performers, my nervous system can’t handle it, causing a seizure. The brighter the stage lights, the worse the reaction is. I’ve learned that this is due to Lyme attacking my brain and eye muscles. I’ve controlled it with medication all these years so that I can get through performances. One day I didn’t take those meds and the concert was halted by an audience member because they thought I was having an epileptic seizure.

How does the disease specifically affect my violin playing, you ask? Well, the muscle stiffness keeps me from playing as accurately as I know I can and there’s always pain. There were a few days here and there when a Lyme treatment gave me relief for a few hours, and I experienced what health feels like. Once in Seattle, after cleaning out my blood with ozone, I felt all my muscles and joints relax, the oppressive fatigue lifted, and I ended up running down the street in tears of joy, like I was in a corny movie. A second ozone treatment did the opposite, so I’ve been afraid to try it again. A couple of times, while taking antibiotics, the symptoms dissipated briefly and I could get around the violin accurately with ease, feeling like I was Heifetz. It never lasts, though.

What the audience hears from me is not Dan on a good day, by the way. There aren’t any good days. The audience hears Dan struggle through each note, trying to create beauty through pain, pretending that it’s okay. Symphony and opera concerts are often excruciating for me due to the constant playing, particularly in restrictive tuxedos under hot lights. A few of the Lyme doctors, when reviewing my test results, couldn’t believe that I still played the violin. But I’m still obsessed with music and the violin is still my raison d’être. I’m fortunate and grateful to have had so much support from my family, friends, colleagues, and a few good doctors.

I first dabbled in composition when I was in high school. However, since the music field is fiercely competitive and my abilities as a violinist were decent but not amazing, I decided to forgo composition to put all my time into being a violinist. Twenty-five years later, a girlfriend asked, “Do you do anything creative?” “Uh, I’ve played the violin day in and day out for thirty-six years,” I replied. “Yeah, but you just play other people’s music, right?” Astonished and horrified, I explained the art of perfecting one’s ability to play an instrument, develop a unique tone and style, and interpret the masterworks. I then realized she was kind of right… I only played other people’s music. Ouch. My first attempts back in high school were pathetic, but after all, music composition is a craft that needs to be learned and developed just like anything else, right? It occurred to me that it’s okay to compose music that isn’t great, or even good. In fact, it’s perfectly acceptable to compose music that nobody likes. This was liberating. I began composition lessons with Cindy Cox, my colleague at UC Berkeley, and got bitten by the bug, so to speak. To date, I’ve composed eighteen pieces and am currently working on a string quartet.  And surprisingly, there are a few people who like my music!

During Covid, I created The Bow and the Brush, a project of commissioning and composing new music inspired by paintings and sculptures. When the pandemic shutdown began, and we were all stuck at home, like so many musicians, I spent my time playing solo pieces on my violin. I felt happier than most because I did this while looking at the dozens of paintings on my walls, collected over many years. Combining the two was an inevitability. I began composing pieces inspired by these paintings, then commissioning my favorite composers to do the same. The feelings I experience when viewing a painting or hearing music seem to be generated from the same place, and therefore feel connected. In my mind, the colors of paint relate to the colors of tone, and the texture of brush strokes relate to the articulation of bow strokes. In the 2022-23 season, I’ve been performing these new solo violin compositions across the United States and Europe, accompanied by projected images of the art. An album of fourteen of these pieces was recently released by MSR Classics.

“Ehrlichia,” Rhapsody in Discomfort #6 came about when Paul and Vicky Ehrlich, my compatriots in Trio Solano, asked me to write a piece for us to play. As close friends, we’d discussed Lyme often, amused by the coincidence that Ehrlichia, one of the diseases under the Lyme umbrella, was named after the Nobel Prize-winning physician, Dr. Paul Ehrlich (of no relation to the violist in Trio Solano). Composing a piece on this topic, with the title Ehrlichia, was a no-brainer, as they say. Originally, it was supposed to be funny but morphed into something that people took seriously, including me. I composed Ehrlichia during the shutdown.  It’s a little different from the other twenty-nine compositions in The Bow and the Brush because the music is inspired by my disease and the painting was created afterwards. The artist, Nancy Schroeder, is a member of the Lyme Art Association, and suffers from chronic Lyme Disease as well (Lyme Disease is named after the city of Lyme, Connecticut, where it was first discovered in 1975).

Are there other Rhapsodies in Discomfort? Oh my, yes. Initially, the title was a humorous cop-out. It’s much easier to compose a piece with little structure that is mostly ugly than a piece that is beautiful or makes sense. My first composition, “Borderline Phantasia,” Rhapsody in Discomfort #1, is for solo violin and it’s really not good. You’ll never hear it. Then came Rhapsody in Discomfort #2 “Where’s My Monet,” which is a very silly trio for two violins and cello, illustrating my deep sadness at not owning a painting by Claude Monet. Rhapsody in Discomfort #3 “Covids Я Us” is a noisy solo violin piece that involves detuning the strings and improvising while coughing. Rhapsody in Discomfort #4 “The Lump in My Throat,” is an improvised solo violin piece where I drag the bow across the instrument from scroll to tailpiece, while tapping a repeated rhythm on the body. “Timeless,” Rhapsody in Discomfort #5 is the first Rhapsody in Discomfort that I expect to be taken at least a little bit seriously. It was inspired by a set of sixteen sculptures made from antique metronomes by Sean O’Donnell, all commissioned by Arc Gallery in San Francisco. An early example of The Bow and the Brush, Timeless is a juxtaposition of chorale-like melodies created through extended techniques on the violin, over a sound collage created by countless metronomes ticking away. Ironically, the very devices used to establish time, dissolve it. I made a video of it in Arc Gallery that you can see on YouTube.

Then we have this story’s namesake. Beginning with a pizzicato tick bite, “Ehrlichia,” Rhapsody in Discomfort #6 brings the listener through the tribulations of a Lyme Disease patient. The repeated Rondo theme, representing the disease traveling through the body, is a fast moving, feverish collection of broken scales in C minor. Each digression loosely represents a different symptom experienced by the victim, and each return of the Rondo theme mutates as the disease develops. Traditional harmonies, tonal clusters, and extended techniques combine to create feelings of discomfort, exhaustion, confusion, fear, and hope. The prevailing aura of the composition is one of foreboding. Toward the end of the piece, the viola introduces intravenous antibiotics with a sequence of inappropriate C major chords. The violin takes over these chords, hammering them relentlessly in syncopation over the loudest and most aggressive statement of the Rondo theme yet. This juxtaposition represents the onslaught of antibiotics and the reactionary “herxing” of the disease. The cacophony resolves into sublime exaltation, portraying the alleviation of symptoms, followed by a passage of blissful calm and relief. Unfortunately, relapse is right around the corner.

InterMusic SF gave us a grant to record Ehrlichia and make a video. Trio Solano made the audio recording with Swineshead Productions, LLC in Hertz Hall at University of California Berkeley, the use of which was donated to the project by the music department. We commissioned Nancy Schroeder to create her painting, then made a video with Tritone Media in a patch of Tilden Regional Park that resembled the scene of Nancy’s painting. This video was shared on YouTube and created a buzz, bringing catharsis to thousands of Lyme patients, as well as prompting articles and blogs within the Lyme community. We’ve received hundreds of comments from victims who thanked us for creating this, and it thrilled us. Many said that it sounds the way they feel. It’s also brought catharsis for me. I know it’s a cliché, but I expressed the pain, and I felt better; and the audience responded. Whenever we perform it, I explain what the piece is about, although I don’t tell the audiences that I have Lyme. Many audience members tell me that “they don’t usually like modern music,” but with my explanation before the performance, they find it riveting. Both the composition and Trio Solano received Silver Medals from Global Music Awards in 2022. Ehrlichia is the only composition of mine that has received this kind of interest. The audio recording from this video will be included on the album, The Bow and the Brush Volume 2, which will be released by MSR Classics in 2024.

This article is the first time I’ve gone public about my disease. Coincidentally, I’m not the only disabled member of Trio Solano. Paul Ehrlich, the violist, suffers from focal dystonia, which attacked his bow arm beginning about fifteen years ago. Vicky Ehrlich, the cellist, had surgery on her hand a few months before we recorded Ehrlichia. The upcoming album will include a new trio being composed by Michael Panther, a San Diego-based saxophonist and composer who suffers from spina bifida. Michael and I have been friends since high school. Perhaps celebrating artists with disabilities will be an ongoing venture for me? And yes, since you asked, I plan to compose more Rhapsodies in Discomfort and encourage you to do the same.

Q&A: Autistic Accessibility in Music

A person with their hand raised in the air

Welcome to Part 3 of my Introductory Course to Improving Autistic Accessibility in Music. In this post, I will answer a selection of the wonderful reader-submitted questions, covering topics like sensory-friendly rooms, classroom techniques, wheelchair accessibility, stimming, and more. I have condensed, edited, and combined several questions.

As always, my answers represent solely my own opinions and do not necessarily represent the views of other autistic people, whom you should learn from as well.

If you need to catch up, you can check out:

Part 1: An Open Letter From Your Autistic Colleague
Part 2: Master Guide to Improving Autistic Accessibility in Music

Here are all the questions in this post.

  1. If an autistic student has challenges with speaking up in class, how can I help?
  2. How can educators make musical groups more accessible to those on the spectrum?
  3. How can I provide better guidance for autistic students interested in performance careers?
  4. How can we navigate situations that welcome some autistic people but exclude others?
  5. Is it okay to ask audience members what their needs are?
  6. What are some good ways to tell audience members that stimming is okay?
  7. How can we accommodate audience members in louder genres like rock, pop, metal, etc.?
  8. What autistic needs can I be more aware of when designing virtual experiences like webinars?
  9. In sensitivity training, I learned to use person-first language, but you use identity-first. So which is it?
  10. What do I need for my sensory-friendly room?
  11. What are your thoughts on traditional “accommodations conversations” and the fact that autistic musicians are often left out of discussions?
  12. Would you be able to consult with us?



1. Comfort and participation

If an autistic student has challenges with speaking up in class in discussions, how should the instructor react? Should we call them out by name, i.e. “…and Kathy, how do you feel about that?” Should we get even more specific, i.e. “Kathy, what kind of chord is in measure 4?” I’m curious how the neurotypical teacher + autistic student relationship can be developed comfortably so as to optimize the student’s learning.

Great question. It seems your key goal and thus, guiding principle, lies at the end of your last sentence: The goal in mind is to optimize the autistic student’s learning. For the purposes of my answer and this audience, I’m going to assume that you mean “learning” in a holistic sense that prioritizes every student’s individualized experience with the material, accounts for different paces, and embraces each person’s unique synthesis of information. I’m also going to assume that you have not already spoken with the student privately about this.

Anyway, you’ve posed a question here about how to compassionately handle an autistic student that has challenges speaking up. First, you might determine whether the autistic student is actually having challenges speaking up, or whether they are simply not speaking up (for whatever reason). Perhaps the student simply does not realize that speaking up is expected, useful, or serves a purpose other than “getting my participation points” or “making the teacher happy.” Moreover, the student may not realize they are being quiet in the first place. I can’t tell you how many times I’ve stopped mid-conversation while talking to a loved one; I simply do not realize that the words have stopped coming out of my mouth, because my thoughts and feelings continue in my brain. Students who are not aware of their silence may respond better when specifically invited to talk.

If the student has challenges with speaking up, I would approach this from a broader viewpoint: In order for any student to speak up in class, they must first feel safe and supported. Thus, if I were a teacher, I would do everything within my power to established a safe learning environment in the classroom from the outset. Safe environment means not only safety from harassment and bullying but also explicit normalization of autistic needs and behaviors. To be clear, I don’t mean specifically naming autism and calling people out, but establishing right at the beginning of the semester that your classroom is neurodiversity-positive, that stimming is welcome, and that you support everyone’s need to take care of themselves, would be a great first step. Throughout the semester, it would then be important to avoid singling the autistic person out. This includes imposing rules on the rest of the class that don’t apply to the autistic person, because as soon as the autistic person “breaks the rule,” other students call it into question (“how come Kathy can do it?”), which prompts the student or teacher to awkwardly justify “because Kathy is autistic and needs an exception.” Yikes.

It would also help to address your expectations with class discussion head-on, give specific reasons why individual contributions may add to the greater whole, and lay out any protocol you have in mind for conducting discussion. You could even ask students to weigh in on the agreed-upon discussion requirements and protocol, though if you let students influence the decision, make sure to hear from every person, not just the dominant few. Do they want to pass a baton around? Engage in discussion loosely? Hear from every person during every class? Allow for ebb and flow? While this may not be possible for all classrooms, it’s an idea to consider when appropriate. This is also a good time to establish hard lines for respect and affirmation during discussion, to note that people have different speaking styles and that while some people speak quickly, others may take a longer time to get their words out.

Now to address your specific, in-the-moment question! Here are some tips.

  • Invite the student to the discussion by using their name (pronounced correctly) and giving them a question that you’re fairly certain they will be able to respond to. Don’t ask a specific, tough question that they may embarrass themselves on. Rather, ask them about something they have experience in (“Kathy, you’re a bassist, what is it like from your perspective?”), something that you already know they have thoughts on (“Kathy had a fascinating take on this in her paper; do you mind telling us more?”), or something that you notice them reacting to in real-time. It is fairly important to help them have a couple discussion wins at first, so they build confidence and learn that their voice is valued in the class.
  • Try having a predictable pattern of responders one day. If you’re simply going down the rows, for example, an autistic person may appreciate the predictability of knowing when it’s their turn.
  • Try having small group discussions instead of large ones. You could even try “turn to your partner and share your answer for a minute.”
  • One technique that I always wished a teacher would implement is accepting written comments during class. If I could have just teleported notes to the conversation facilitator in some way, that would have been awesome. I never used to speak in class, as I wasn’t comfortable with my verbal expression. My written language has always been more cohesive and how I wished to present my thoughts.

Last piece of advice, I swear, is to just let a quiet autistic student be. If they have been cognitively drained by other stressors during the day, they may simply not have the juice to participate or even learn.

2. Children’s musical groups

How can we help autistic children navigate participating in the music community? I’ve run a children’s choir for a number of years and have struggled with trying to successfully include children on the spectrum. For the ones who have joined us, we’ve worked through ways to help them, and the musical opportunity has been SO good for them, including helping them make huge connections with language and social skills. However, it is not an easy atmosphere for someone on the spectrum, as it can be loud and overwhelming. I’m a mother and sister of autistic people as well as a music teacher. I’d love to hear your insight as to how you grew up in the music community (what worked and didn’t) and how educators can make musical groups more accessible to those on the spectrum.

My experience growing up in the music community included private violin and piano lessons, orchestras, concerts, recitals, competitions, auditions, evaluations, and very briefly, choir. A few specific things that did work: one-on-one time with teachers, options for quiet time and space, and hearing my questions and comments validated (made me feel important and encouraged me to talk more). A few specific things that didn’t work: unclear instructions, rules without a reason, nonspecific start and end times, when teachers called attention to my unusual behavior.

However, the worst part is that felt I didn’t belong. Even more awful, I felt that the burden was placed on me —to fit in better, to learn how to talk to the other kids, to learn my social skills, to erase myself and my needs—rather than on my peers and facilitators to validate and understand me better. I see this happen often. Autistic people are always taught skills to “blend in better,” to play better with the neurotypicals, and are even subjected to therapies that reward acting “normal.” Even outside of a formal setting, hearing continued positive reinforcement for acting neurotypical instead of “autistic” (i.e. stimming less in public, not complaining about noise, etc.) can be damaging for autistic children, as it reinforces the notion that they are not intrinsically okay and that they should hide themselves, deny their own needs, and be ashamed of themselves. Let me tell you, the effects of this play out well into adulthood. I still struggle with it daily.

Thus, the best thing an educator can do to make a musical group more accessible to those on the spectrum is to make adaptations that intrinsically make it easier for autistic youth to participate without needing a special exception or aid. You mentioned that the atmosphere is not easy for an autistic child, as it can be loud and overwhelming. Are there any aspects of the loud, overwhelming environment that are within your control? If so, start there. Maybe you can’t control how loud it is when the choir sings together, but you teach “quiet voice” rules during social time. Could you also make a special “quiet signal” to help the class snap to a quiet state? If you currently use a bell or something loud and obtrusive, consider switching to a more muted, less jarring signal. Perhaps it is also possible to make a safe escape zone, though I understand that can be difficult if you don’t have help monitoring students. You could also offer earplugs, sunglasses, or other aids to assist with sound and lights.

Last but not least, you mentioned that you have an autistic sibling and child. If you were designing a choir rehearsal for them, what would you provide for them to feel comfortable? Maybe you could even ask them what they would like. If other parents ever insinuate that you’re unfairly giving autistic people like your child “special treatment” that “encroaches on the fun and freedom of everyone else,” then I kindly invite you to nod and smile, because yes, the aim is to make life easier for autistic people and indeed make it harder for others to conveniently ignore us.

3. Career preparation

I have had at least one autistic student in my bands and orchestras every year throughout my 20-year teaching career. I would like to provide better guidance for those students considering a performing career. What are some possible differences in career preparation and career development between an autistic and allistic aspiring professional musician?

Great question, and I love where your mind is going. My thoughts:

  • Help students really “see” and lean into their strengths. Many students and early professionals are either not sure what makes them unique, or they’re only able to frame their unique aspects as negatives. Thus, the more you can guide a student toward owning and harnessing the power of their strengths, rather than focusing on weaknesses, the more confidently they will be able to approach a career. Are you familiar with the Strengthsfinder 2.0 book and accompanying strengths test? That helped me in ways I didn’t expect.
  • Expose the student to a wide variety of career options, not just on paper but with specific role models, videos, interviews, and a breadth of examples. Include autistic folks too, so they can see people like themselves in a variety of music careers (even if not performance).
  • Be creative with your guidance and embrace alternative techniques, careers, and options with the same amount of respect and enthusiasm that you do traditional paths. Some autistic people want a traditional career, like playing in an orchestra, teaching music, or becoming a soloist. Others do not. Some autistic people who want a traditional career only do so out of default, not knowing other options, or hoping it makes them gain respect.
  • Look out for signs that the student is trying to please someone other than themselves. There’s a bit of a joke within the autistic community that many of us are “late bloomers.” After being told what to do and how to act for so long, it can take a while for an autistic person to trust their own instincts.
  • When giving advice, get to the heart of why your suggestion is important. Autistic people may have a harder time adapting to new skills, particularly if we experience roadblocks beyond the normal learning curve or general discomfort. Having a concrete reason to learn a skill might help us stay motivated along the path, assuming we also agree it is a worthy goal. On the other hand, having real reasons may help us devise a creative workaround that accomplishes the same goal instead. One example is with networking. Instead of saying, “Going to networking mixers is hard but important,” speak to why exactly they are helpful. If the goal of attending a networking mixer is to build relationships, establish a continued presence, or show off a recent project, perhaps a student can think of alternative ways to accomplish those aims. I’ve had great success building relationships online, sending personal emails instead of congratulating performers at concerts, and sharing my thoughts in writing rather than verbally.
  • Help autistic students come up with a plan and some initial action steps. Cognitive hurdles can make it tough for an autistic person to organize a plan, especially with limited knowledge of the industry, so any hands-on guidance or accountability would go a long way.

audience taking notes


4. Conflicting Needs

How can we navigate situations that make one autistic person feel welcome but another feel excluded?

There is no easy answer to this. The best I can think of is:

  • When it comes to sensory environments, give preference to less stimulation rather than more stimulation. Being overstimulated tends to be more painful than being understimulated.
  • When appropriate, see if it’s possible to have different zones for different needs.
  • While not perfect, in group settings it is necessary to negotiate different needs. The more an organizer can do to assist in this endeavor, the better. For example, in order to accommodate people who may need to walk, shuffle, or move their feet during a concert, an organizer can lay out a fuzzy rug or other soft floor material that absorbs sound. Socks or slippers can be provided while using the rug. Sure, these guests would be compromising a little by remaining in the sound-dampened space, but I believe the genuine effort would be better than nothing.
  • Autistic author and educator Nick Walker has great suggestions on the subject of conflicting access needs in their blog post “Guiding Principles for a Course on Autism.”

5. Can I ask?

Is it okay to ask audience ahead of time to let me know if they have any specific needs? If so, how could I pose that question without making autistic people feel uncomfortable and different? I don’t want to inadvertently embarrass someone who doesn’t want to be open about their autism, but on the other hand, if I know specific needs, I can tailor the experience more.
Generally speaking, I think it is okay to ask an audience ahead of time if they have specific needs. However, this would all be dependent on how you’re asking, through what medium you’re directing the question, how well you know the audience, if you’re talking about specific audience members, and other factors.

If you’re unsure how to go about this, applying concepts from the Master Guide to Improving Autistic Accessibility in Music is a great place to start. You could even use the guide to help you come up with specific leading questions. Perhaps you could provide a link to a Google form or other survey that includes checkboxes with options for various sensitivities and needs. But before even going through that trouble, I would operate from the basic principles in the Master Guide, remembering that when it comes to sensory things, less is best, even though some autistic people prefer more.

If you have specific friends or acquaintances in mind who are already open to you about their autism, then I think it’s worth asking. It would help if you gave them a starting point (such as providing two options or describing the basic concept), rather than listing needs with no baseline. Personally, it makes me feel vastly more “uncomfortable and different” to go to an event clearly not designed with people like me in mind than it does to be asked and provided for. Keep in mind when asking that an autistic person may not feel like responding and may even ignore your message. Don’t take it personally. And don’t cross the line and starting asking them to “okay” your every decision. Simply try your best, put on the event, solicit honest feedback, and tweak your efforts.

6. Stimming PSA

What are some good ways to tell potential audience members that stimming and moving around at a performance is okay, and good ways to let allistics know that autistics may be doing so (how to prepare for allistic push-back, really)?

I’m so glad you brought this up and specifically mentioned the importance of communicating the message to non-autistic folks, too. I hope everyone reading this takes note: It is never enough to privately let autistic people know that their stimming (or other behavior) is welcome. Unless everyone knows and gets it, stimming will never truly be welcome.

I would write a “Stimming PSA” and state it as plainly and unapologetically, in as many formats as possible. If an event has printed programs, put it on a main page of the program. Make a verbal announcement at the event. Put it on the Facebook invite. You could even print out some signs with a few audience reminders on them. Think of the places (visual and verbal) where parking, transportation, accessibility, and other information would go, and those would also be good spots to include the stimming PSA.

I’ll think of some ways to phrase a potential “Stimming PSA” and put that in my next post of this series. Post 4 will be all about pro-tips and sample scripts for autistic accessibility, so this would fit in nicely.

7. Rock concerts

What are some good ways to accommodate audience members who become easily overstimulated during live shows, especially in louder genres like rock, pop, metal, etc.?

Be upfront in advance about the sensory warnings, designate a few “safe zones” for sensitive folks to escape to, and offer earplugs and other helpful aids. The Master Guide to Improving Autistic Accessibility in Music will provide more things to keep in mind! Aside from noise levels, big rock and pop productions may have overstimulating visual triggers (such as strobe lights) or elements of surprise (like pyrotechnics). Communicate these in advance as well. Last but not least, enforce audience conduct, minimize situations in which autistic people may be touched, bumped, or splashed, and provide a point person to help with any onsite accessibility requests.

8. Online events

What autistic accessibility needs can I be more aware of when designing virtual experiences, like online workshops and webinars?

A lot of accessibility needs are the same in virtual events as they are in live ones. Thus, the information in this Master Guide to Improving Autistic Accessibility in Music applies.

Particular things to keep in mind:

  • Provide clear, detailed instructions prior to the event. This should include the start and end times, how to log in to the event, protocol for interaction, and anything else that would enhance an audience member’s experience (i.e. bringing a notebook, being in a quiet place, etc.).
  • List any potential sensory (sonic + visual) triggers or trigger warnings for the event, and of course, minimize the occurrence of triggers.
  • Provide closed captioning, a transcript, and/or other written materials whenever possible.
  • If you’re showing slides, offer to share them afterward, even if upon request.
  • Please get your sound issues sorted out prior to the event! This is huge. Crackling, feedback, static, pops, or other things can be prevented with soundchecks. As a musician and frequent livestreamer, I am very sympathetic to sound and tech issues—and I know how out of our control they can be at times—but if you have any power to make your sound clear and smooth, please harness that power! (It will also make your event much more professional for everyone else, too. Win-win!)


9. Sensitive language

In all the “sensitivity” training I have had in the past ten years about supporting people with disabilities, we learned that you should use person-first instead of your suggested disability-first (i.e. “autistic person”) language. Now I’m so confused. Would you say this is just for autistic people, or am I now a few years out of date if I refer to people with disabilities… ? Help!

I’m glad you’re asking, because as you can see, the tips learned in sensitivity training are always subject to change. Indeed, most autistic people prefer identity-first language: autistic person. This is how all my autistic circles talk to one another and refer to ourselves.

Autistic self-advocates, and yes, many other disabled self-advocates too, tend to prefer identity-first language: autistic person, deaf person, disabled person, etc. However, like I mentioned in the Open Letter, there is no universally agreed-upon way, so you can never be 100% sure. Always default to whatever an individual prefers.

It is worth mentioning that the parents and loved ones of autistic folks sometimes insist upon person-first language. This may be confusing, because it contradicts what I (and many other autistic people) are saying. But I kindly ask you and other readers to prioritize the requests of autistic people rather than their parents. Thus, if autistic people want to be called autistic people, then call them that, even if their parents insist on people with autism.

Hope that helped! Remember that sensitivity training should always be taken with a grain of salt, as it often comes from the perspective of teachers who do not belong to the groups they teach about. It also tends to have an “us” vs. “them” vibe. I’m glad you’re using your sensitivity training as a starting point while also taking care to dig deeper.

10. Details for an autistic-friendly room, disability

I run a concert venue and have received feedback from numerous autistic audience members. I am now working on a plan to turn two soundproof tech booths (with full views of the stage) into rooms for people with different sensory needs. Each room will hold up to four people, have adjustable sound, have four moveable high stools along with, perhaps, a bean bag chair. What should we call the rooms when we launch this program? Surely not “Autism Rooms”? How do we deal with those that feel they will be segregated? How do we determine if someone qualifies to use the rooms? What if someone has a physical disability and sensory issues? Are we obligated to have the rooms be wheelchair accessible? In a perfect world, yes, but the rooms as they exist would need major renovation to accommodate wheelchairs, and we already have other wheelchair seats in the main house.

I absolutely love that you’re thinking about this and taking real steps to create an autistic-friendly space. This has the potential to be groundbreaking. Here are my thoughts:

  • First and foremost, bring an autistic person on board as soon as possible to help you plan and build this. It is imperative to have autistic people guiding the needs of the space, or it’ll be easy to overlook obvious things.
  • In addition to your high stools (which I assume are there in order to see through the window) and beanbag, I also recommend providing more seating, like a couch or wide, sturdy chairs. Stools are difficult for many people to sit on, and they have limited weight maximums. I would additionally put in a soft rug or install soft flooring (like the ones you see in Kindergarten classrooms), provide pillows, and other moveable comfort aids. Anything to make the room truly comfortable would be lovely.
  • To take these rooms to the next level, you might consider providing a chest or box of sensory aids, like fidget cubes, pipe cleaners, Play-Doh, or stress balls to squeeze.
  • You’re right; don’t call them “Autism rooms.” I’d go with “Sensory-friendly room” or something similar. Focus on the qualities of the room itself, rather than the target audience.
  • Regarding “those that feel they will be segregated,” I’m assuming that you won’t be forcing autistic people to go into that room, no? I don’t think it will be much of a concern, especially if the room is presented as a friendly, optional
  • How do you determine if someone “qualifies” to use the rooms? It’s simple: You don’t. There should be no barrier and no gatekeeper. If the rooms get too crowded, you could try having a volunteer at the door to keep track of capacity and manage a waiting list. If it is still unwieldy, think of other fair ways to manage the room and give people their turns without ever asking someone to prove their disability or discomfort. This is incredibly important.
  • Are you obligated to have the rooms be wheelchair accessible? Yes, you must make these rooms wheelchair accessible, or they will only serve a half purpose. I give this advice both from a “compassion and inclusivity” standpoint and from a business perspective. First of all, it is a common fallacy among well-intentioned allies and organizers to assume that autistic people are “only” autistic. The default autistic person is generally assumed to be able-bodied, white, cis, straight, hearing, sighted, or otherwise socially dominant, because this makes it easier to triage the autistic person’s needs. However, the reality is always more messy than that. Many autistic people reside in a complex set of identities, and if only one of those identities is being welcomed, then it is still not enough. For example, I am a queer, autistic person of color. I often do not go to queer events, because they aren’t autistic-accessible. I often don’t go to autistic social events, because they are not always queer and poc-friendly. You will have autistic concertgoers who use wheelchairs. You will have autistic concertgoers who are accompanied by friends or family members in wheelchairs. Thus, going through all the labor to make an autistic-friendly room without also making it wheelchair accessible would be tinged with fallen potential. Able-bodied autistic folks may even notice it too, and it may impact whether they invite their physically disabled friends to the venue.
  • From a practical standpoint, people will notice the lack of wheelchair accessibility, especially since the intrinsic purpose of your endeavor is to be welcoming toward more disabled folks. There aren’t many venues with sensory-friendly rooms, and for that reason alone, I have a feeling your rooms are going to attract attention, both publicly and by word-of-mouth. If I went to a great event with an accommodating sensory-friendly room, for example, I would be eager tell everyone I know, spread the good word, and urge people to support the venue. I’d hate to see your good-intentions and positive news marred by a glaring lack of wheelchair accessibility. As you state, accommodating wheelchairs would require a big renovation, and from an outsider’s perspective, it seems easier to fix it up sooner rather than later. If cost is a major barrier, could you rally your local arts community and raise funds for the effort? Apply for a grant? It seems like a worthy reason to raise money, and it is certainly worth waiting extra time for.

11. Inviting autistic folks to the accommodation discussion

As an autistic musician and composer, I find a lot of the proposed “accommodations” for autistic people in performance environments like concerts, film stagings, etc. don’t work for me because they don’t account for the particular ways I synthesize music and sound. For example, it is often suggested to allow people to vocally react or to keep the lights on during performances, but I would just find that distracting (it doesn’t help that I also have ADD in addition to autism). I was wondering if you had thoughts on how autistic musicians as a group are underrepresented in these conversations and some of the ways traditional “accommodations” conversations don’t always work for you.

I’m with you. Many traditional “accommodations” don’t work for me (including the same ones you mentioned), and autistic musicians are definitely underrepresented in these “accommodations conversations.” In fact, autistic people in general are left out of these conversations, which usually take place within a group of well-meaning allies. I can often tell when an event has been organized by an ally, because there will be some awesomely accessible things but then other blatant concerns will be missed. As well-studied and compassionate as an allistic ally is, their knowledge will never cause them to fully understand what it’s like to exist in an autistic body and mind—and it’s not their fault. That makes it even more crucial for autistic people to be included in these discussions as well.

Sometimes, non-autistic “autism experts” or loved ones of autistic people are brought on to inform the conversations, but their secondhand experience is also not a substitute for real, autistic experience.

You specifically mention autistic musicians not being incorporated into accommodation discussions, and that is a great point. For music-related events in particular, having an autistic musician on board to consult with on accessibility details could save time, effort, and provide a better experience for audience members. I recently made an audio accessibility suggestion at an event, and because I both noticed the sensory triggers and knew how to describe the origins of the triggers (a piece of equipment and a style of mixing), the organizers now have a better idea of how to troubleshoot sound next time. With regard to your particular examples of keeping lights on and allowing vocal reactions, this touches on a broader issue of conflicting access needs. I talk more about that in question #4.

By the way, I also have ADHD. Apparently, it is not uncommon for autistic people to be neurodivergent in both ways.

12. Consulting

I run a prominent center for music therapy that works with a variety of people, including those diagnosed with autism. We were recently approached by the head of a vocal performance program who wants help in supporting autistic students. She maintains a policy that she cannot accept any student who will not be able to successfully get a job singing. She wants to do all that she can to help these potential students get accepted into her program and succeed. Would you be able to consult with us and share your ideas, both on how to create accommodations to make classes more conducive and also how to help the students develop the social skills and emotional awareness the program director deems necessary to complete the program? We are considering having a support group at our music therapy center to help these students succeed.

This is a complex question, but I’m happy to hear that the head of a performance program is interested in supporting autistic students. I’m curious what it means to “successfully” get a job singing, as well as what kinds of “social skills and emotional awareness” the program director deems necessary. I think having a support group at your music therapy center sounds like a great idea, provided that it is facilitated by autistic people. If you’d like to consult further, you may email me at [email protected] and we can set up a session.

Thank you to everyone who submitted questions! I hope this Q&A was helpful. If I didn’t get to your question, or if you’d like further consultation, you may email me at [email protected] to schedule a conversation, as availability allows.

To all readers, thank you for your attention and consideration. I appreciate your curiosity, compassion, and commitment to improving autistic accessibility in your corner of the musical world. Stay tuned for Part 4, the final installment of this series, next week!