The Musical Autist is dedicated to all people on the autism spectrum who love music, which is probably a majority of autistic people. And probably most people in general, right? For today, The Musical Autist is just a little blog I’m starting, but The Musical Autist is also an idea and a philosophy – to celebrate neurodiversity and be a platform for autistic advocacy, through music.
My name is CJ Diachenko, I’ve been a piano teacher for over ten years and I’m back in school now to become a Board Certified Music Therapist. I believe the concept of a site like this is capable of being an excellent stomping ground for my piano students’, and future music therapy clients’, self-expression. And I believe The Musical Autist can be part of something even bigger than that, aligning with organizations like Autistic Self Advocacy Network and actively changing the way the neurotypical world sees autism.
Like any good idea, The Musical Autist has been birthed in a simple and humble way. That is the way it is supposed to be. I worked diligently at this blog for a month straight – putting my big ideas into concrete word constructs, which is not easy for me. And now, at the wee hours of 5am, here attending my first music therapy conference (more on that later) on April 1st, I am grieved that my written thoughts are lost, due to the simple mistake of a new techy friend in the music therapy field who meant to do well. My original site had its death by the word “reinstall,” at 12:30am this morning, when it was attempting to launch. I should have written it in a word doc first, sigh.
But The Musical Autist is supposed to be born today April 1st 2011, it must be! The reason this date is so important is because today is the first inaugural day of officially celebrating Autism ACCEPTANCE. This initiative is being started by my good friend, Paula Durbin-Westby, who is a leader in ASAN, and I’m so excited to see where this will go. To stick with the alliteration, it’s time to move beyond “awareness” to acceptance, accommodation, and appreciation.
See, April 2nd is promoted as Autism “Awareness” day by Autism Speaks (which those of us in the autistic community refer to as A$.) They employ pity fundraising tactics to raise millions of dollars that go toward “extinguishing” autism, with research that is focused on genetic and prenatal testing, which means eugenics… talk about scary. And they don’t have a single autistic person on their Board of Directors.
Since last fall, I’ve had the opportunity to get to know some pretty cool people at Autistic Self Advocacy Network. This is the type of organization I can get behind and want to be a part of. Last November, I joined a group from ASAN doing an A$ protest in DC on the National Mall. There were about 20 of us standing on the grass (complete with a DC police officer making sure we stayed behind our designated picket line) chanting “nothing about us, without us!” while thousands of A$ supporters walked by with their signs, in groups choosing to wear all the same colored shirts and competing over how much money they can raise, to line the pockets of A$ founders, Bob and Suzanne Wright. A lot of them gave us dirty looks and ignored us, but some of them actually yelled derogatory names at us. It was eye opening and I still can’t figure out the words for it all. I stood next to someone who was holding up a sign that said “I’m actually autistic, ask me why I don’t support Autism $peaks.”
Also important to note here that the 3% budgeted toward family services all goes toward early childhood and school aged children. There is zero focus on supporting autistic adults. But guess what? Autistic children grow up to be autistic adults.
It felt so good to meet other fellow autistic rights activists at this protest. The weekend before it had been the A$ Walk in Baltimore, and I did a singlehanded protest by myself, running between groups of walkers and handing out half page info sheets about why they should reconsider giving A$ their money. But that is a blog story for another day.
So all of last year (2010), I was getting involved with ASAN and making some friends. Thanks to my sister who introduced me to her friend from undergrad, Remi Yergeau. Remi was the one who introduced me to a lot of other people and I’m forever grateful to them. By the way, I don’t have an official autism diagnosis but it runs in my family. And I will say that I’d rather hang out with autistic people any day of the week, than a room full of pretentious and trendy people. I’m sure that’s because I’ve always connected with the underdog side of life, having grown up in the Baltimore/DC punk rock, ska and reggae music scenes of the 90s… skateboarding, Vespa scooters… my older brother has always been hardcore and I have him to thank for all of these things. I’ve always fit in better with people who know they don’t fit in, and don’t even want to.
Now fast forward to April 1st, 2011 and I find myself sitting here alone in this hotel room, grieving the loss of my original intro post, but also feeling like a chameleon and that unnerves me. I’ll explain. I’m in Saratoga Springs NY right now, at my first ever music therapy conference. Last fall I started a music therapy equivalence program at Shenandoah University. I already have a bachelors degree in music, in piano performance and a minor in music education. I’ve been teaching classical piano lessons for over 10 years already. And I keep picking up new, amazing students who are on the spectrum. It’s made me really determined to go back to school to become a music therapist! But now that I’m here at this conference I have to say it’s not what I expected, not at all. The sessions I’ve been going to are fantastic, l’m loving the stuff I’m learning about Nordoff Robbins and DIR Floortime – that stuff I’m eating up. But there’s something weird I can’t quite put my finger on. I’m mostly just amazed by how the majority of attendees are in my same demographic – young, white American women. I’m surprised by the lack of diversity. Same business casual outfits with comfy flats, the same vivacious chit chatty voices in the hallways between sessions. The vast majority seems between college aged and 20-something young professionals. So I’m not quite in the same category, coming into the music therapy field in my 30s, but I can still play this part if I need to. And why would I even want to?
Because I can’t believe not a single person I’ve met so far knows about the neurodiversity movement. This is just not right. And I feel like I can do something to change that. It feels like a pretty good mission at this point in my life. I can do all the socializing and networking that it would require, I even enjoy that kind of thing. Haha I guess all those skills getting backstage to meet my favorite bands is now paying off. Because I can usually pretty quickly assess who the leaders are in social situations, and quickly figure out how to make the connections I want to make. I also realize the privilege I have in being able to do this, being the young, white, neurotypical-passing female that I am in a dominantly young, white, neurotypical female environment. But if I can just make myself known in these circles, then I can help to open up their eyes to the same things about autism that my eyes have become opened to since last year. And being that I’m back home in Maryland (goodbye Colorado mountains I’ll love you forever) and have a fresh new start over in life, I can’t think of anything I’d rather do with my time.
So figuring out what the music therapy field is made of is what I’ve been doing for the past couple days. It’s quite a little adventure I’ve created for myself. But I’ve been continually surprised and disappointed that even the most well educated professionals here are not even familiar with the term neurodiversity! Or can draw any kind of connection with the autistic community and disability rights. These are people who consider themselves “experts” about autism and they’re not even “aware” of organizations like ASAN and AutCom, this is so wrong. I sat in some kind of regional business meeting yesterday with a hundred or so people in it, and someone made an announcement about Autism $peaks and Light It Up Blue. After they stopped, I could feel myself jumping out of my chair and starting to speak. I heard myself saying that people might also be interested in looking up an organization called Autistic Self Advocacy Network, and that there are many autistic people who stand against everything Autism $peaks represents. Everyone stared at me, the speaker at the podium awkwardly thanked me, and I sat down, trembling.
Now I feel like I have a job to do. Advocating for the neurodiversity movement within the music therapy field. And honestly, I like being the first to do something, and finding other kindred spirits that are moving in the same direction. Music therapists would benefit SO much from having the same learning opportunities as I have had about autism in the past couple years… not from a textbook, but getting to know autistic leaders at ASAN, people like Remi Yergeau, Ari Ne’eman, Paula Durbin-Westby, Katie Miller and Stan Provençal.
So, for today, The Musical Autist is here to say, celebrate neurodiversity!
And all that is musically autistic!
Peggy Durbin says
Congratulations on your determination to push on even in the face of setbacks! That’s what the blog is all about, right?
Mark Ackerman says
Woohoo!! Love you sis.
Carol Diachenko says
Happy birthday to the Musical Autist!!!! Your name is intriguing and brilliant!!!
Congratulations to you, Christy! So nice to meet you, and I’d like to add that I am in complete and utter agreement with you regarding listening to people chew! Ack!!! Looking forward to reading more…
thank you Roia! I’ve enjoyed meeting you and finding a fellow kindred spirit!