An Open Letter From Your Autistic Colleague

Musicians, arts administrators, colleagues: It’s time we talk about autism.

No, we’re not talking about autism charity efforts, nor once-a-year concerts for autistic children, and goodness, no, not inspirational stories. Autistic people exist at all ages, all times of the year, and in rather ordinary aspects of life. We’re everywhere: We are fellow musicians, collaborators, and artists. We are enthusiastic audience members, patrons, and guests. And so it’s time you adapted a permanent framework for improving autistic accessibility in your concerts, rehearsals, and other music organization efforts.

Allow me to introduce myself: I’m Chrysanthe Tan, a real-life, autistic violinist, composer, and recording artist, and in my near-decade of working in many music spheres, I’ve noticed an unacceptable, overwhelming status quo of autistic inaccessibility. I have sat through rehearsals while on the verge of vomiting from sensory discomfort, cradled my head and rocked back and forth in my chair when rooms got too loud, and skipped many concerts due to the panicked embarrassment of not knowing attire or protocol.

While certainly upsetting, unfortunate, and uncomfortable, the lack of autistic awareness in the music world is not intentional, nor is it purposely aggressive. I know this. Ironically, that makes it even harder for me to discuss it with people. I don’t want to be too accusatory, don’t want to cause misinterpretation, don’t want to deal with defensiveness, and definitely don’t want to feel bad for requesting fairer access. It’s a whole thing. But the time has come.

I’m ready, and you’re ready too.

Over the next few weeks, I will be laying out a compassionate, no-bullshit guide to upping your autistic accessibility game as a musician or arts presenter. This information — separated into four parts — is geared toward anyone who works in or otherwise takes part in the making or presentation of music. This includes students, teachers, administrators, conductors, soloists, ensembles, producers, contractors, classical artists, pop musicians, and, well, you get the point. The information presented will be applicable to numerous contexts. It will help you increase your understanding of autistic colleagues and concertgoers–hopefully in a way that enables you to make better future judgment calls. The information will be actionable.

Here’s what to expect in this four-part series:

• Part 1 (this post): This article serves as the introduction to the column and includes a basic primer on autism and how to treat autistic people. Having these basics down will make it easier to internalize the information in the following three parts. We only have this short time together, so it’s off to the races!
• Part 2: Master Guide to Improving Autistic Accessibility in Concerts (and rehearsal spaces). I’ll tell you what autistic-friendly considerations to keep in mind, give pointers making event invitations more accessible, and cite things to avoid in your planning. I’ll also offer tips on making collaborative spaces and relationships more autistic-welcoming.
• Part 3: Q&A and Case Studies – In this post, I will answer specific questions pertaining to autistic accessibility in music spaces. Thus, I’ll need your questions in advance — by March 10! Please take advantage of this opportunity to ask nitty gritty, embarrassing questions and even submit detailed examples of what autistic accessibility questions you’re struggling with. Should you choose an indoor or outdoor venue? Assigned or unassigned seating? Is your event invitation missing any crucial information for autistic people? I look forward to answering and helping to troubleshoot these questions. NewMusicBox has kindly set up this form, which you can use to anonymously submit.
• Part 4: Pro-Tips and Sample Scripts – This last post will be filled with ideas for how to be a more powerful advocate for autistic people. I’ll also include sample language for more inclusive programs, invitations, emails, interactions, and more.

A Primer on Autism and Autistic People

You’ll want to familiarize yourself with these terms and concepts before reading the rest of the series.

1. Autism is a neurological, developmental, and pervasive way of being that can manifest in a variety of ways, including but not limited to: sensory sensitivity, communication impairments, atypical social skills, and atypical information processing and learning styles. Autism is generally referred to as a disability or disorder, though some autistics prefer not to identify it as such. Selective use of the “disabled” term is also common, depending on the context and company.
2. Allistic refers to a person without autism. It can be used as a noun (i.e. an allistic) or an adjective (i.e. allistic people). Some people use the word neurotypical to mean the same thing, though allistic is more precise these days.
3. Autistic Person vs. Person with Autism – You’ve probably noticed that I’ve referred to “autistic people” rather than “people with autism.” While there’s no hard and fast rule on this, autistic self-advocates tend to favor identity-first language (i.e. “autistic person”) over person-first language (i.e. “person with autism.” Calling someone a “person with autism” distances the person from the identity, implying a separation between the individual and the disability. However, many autistics consider their autism an important part of their identity and wish to embrace it in the same way that I also call myself Cambodian, Greek, and queer. If you’re truly not sure what label to use with a person, you may also default to “person on the autism spectrum.” But when in doubt, simply ask the person, and always use what they desire for themselves. You can read more about identity-first vs. person-first semantics on Lydia X.Z. Brown’s Autistic Hoya blog.
4. Don’t brush it under the rug! – If you have an autistic friend, family member, or colleague, your instinct may be to politely ignore their autism, not treat the person any differently, and offer seemingly comforting phrases like “I see past your disability,” “Your condition doesn’t define you,” and “I hardly even notice your autism.” However, for many autistic people — myself included — this can be harmful, as it reinforces the internalized shame autistic people have learned. If you’re awkward about my autism, I’m awkward about it in turn. And if you claim not to “see it,” then I wonder if you are in denial, whether you accept me despite rather than wholeheartedly including my autism, or whether I’m inconveniencing you if I dare bring up the “A” word or state my special needs. It sucks. Please don’t default to this unless your autistic colleague or loved one specifically tells you not to acknowledge it.
5. Autistic people are *not* the same as “everyone else” – Forget what you learned in elementary school; we are not all the same. Yes, we are all human beings who deserve love and respect, but autistic people do have unique needs and often do need special accommodations that allistic people must learn about. Acknowledging our different realities isn’t a bad thing; in fact, it can help you learn how to interact with us better, deepen our relationships with you, and increase our comfort and accessibility.
6. Autism vs. Asperger Syndrome – A lot of people wonder if these are the same thing. Truth is, it’s confusing, so here’s the quick sum-up: Asperger syndrome used to be in the DSM-IV as a diagnosis nearly identical to autism, except with “no clinically significant delay in development of language.” In 2013, the DSM-5 removed Asperger syndrome and introduced autism Spectrum Disorder (ASD) as a unified umbrella term to include all of the various autistic disorders instead. Thus, a person diagnosed with Asperger syndrome pre-2013 would simply be diagnosed with autism today. Because many people originally diagnosed with Asperger’s choose to maintain their given label (as is their right), it is still common to hear the Asperger label today. This whole terminology hullaballoo is quite controversial in the autism community.
7. If you know an autistic person, you know ONE autistic person. Autism is a big spectrum, and no two presentations of it are exactly alike. One autistic person’s biggest impairment may be another’s greatest skill. Moreover, the popular media representations of autistic people tend to favor a shockingly limited set of looks and behaviors (think the main characters in Rain Man, Atypical, or The Good Doctor). All of these examples portray white, cis, straight young men. It wasn’t until more recently that professionals started to notice the signs of autism in girls and non-binary people; turns out, we often have more hidden or subtle characteristics, potentially as a result of more intense social pressures growing up. To top it all off, autistic people tend toward extremes, which often lie in direct opposition to those of other autistic individuals. For example, some autistic people are incredibly sensitive to the cold, while others cannot stand heat.

This is where I shall stop, for now. Thank you for sticking with me and for making a commitment to improving autistic accessibility in your music world. Next week, we’re getting right down to the specifics.

But in the meantime, here’s what I need from you: As I mentioned above, Part 3 in this series will be a Q&A with your submitted questions and conundrums. Thus, I need your questions! The deadline to submit is Sunday, March 10, and you can do so anonymously by using this form or by sending an email directly to [email protected]. The more context you can provide about your situation, organization, or concert, the better!