Autism speaks softly, but does not carry a big stick. Perhaps that's the problem. Often overlooked in the many policy ideas under the umbrella of health care, autism is too often a lower priority when push comes to shove in the legislative agenda. Perhaps a bigger voice is needed, figuratively, a bigger stick if you will!
That's why I was happy to participate in community outreach meetings on behalf of the autism activists in the Cedar Valley. I am excited to see the vision of Uncommon Sense come to fruition. By raising awareness of what IS in the autism world, we can begin to work on what OUGHT to be ... on behalf of persons with autism, their families and support network.
I look forward to celebrating the completion of Uncommon Sense, which will raise awareness and increase understanding, leading to action to improve the health care services for those on the autism spectrum.
If you asked me a year ago, “Do you think you’ll ever work on a theater piece about the almost terrifyingly broad topic of autism,” I probably would have scoffed, shrugged and gone back to whatever video game I was most likely playing at the time.
I guess I always thought it’d be possible, just not so soon, or in such circumstances.
My name is Andrew Duff, and for the past few months I’ve been working with Andy Paris and Anushka Paris-Carter of the Tectonic Theater Project on their work in progress. The piece “Square Peg Round Hole” (coincidentally, a title that is also a work in progress), has been a personal project of Andy and Anushka’s for close to two years now, and was sparked by the fears, frustrations, curiosities and joys that come from being a parent of an autistic child. As opposed to focusing on one “type” of autism, or even one aspect of the life that comes with it, Square Peg gives everything it’s fair share of the limelight. Schooling, diagnosis, parenting, anxieties, love, everything is considered and represented in some fashion. Because they are parents of children on the spectrum, they are able to capture both the positive and negative moments with amazing accuracy and respect for the material at hand.
Now, I suppose you might be asking why I’m writing about the play. Sure, I’m in it, but how connected am I to the subject at hand? What makes me think I am any sort of authority on the subject? Do I have a sibling on the spectrum, perhaps? Well, I have two siblings, but both are fairly neurotypical.
Actually, I’m the sibling on the spectrum.
It’s a potentially long story, so here’s the short version: I was diagnosed as autistic when I was very young, was put into ABA, and “rose through the ranks” until I was in standard classes with little, and eventually, no support. I even had my IEP, or Individualized Lesson Plan, taken from me, something I personally believed was with you for life. To put it simply, I got “better”.
I found, however, that being “better” isn’t always “better.” I struggled throughout college with the idea, and didn’t know what to do. Many nights were spent walking around the campus, gazing at the stars in the Vermont sky, wondering to myself when I was going to hit that wall of limitation. I sensed it was coming soon, or at least I thought I did.
In an effort to confront these fears, I based my senior work around, well, myself. I filmed a short documentary on the subject, and also made a solo performance based around my life and living on the spectrum. My degree is in video and media studies, you see, but around the end of my sophomore year I was convinced to audition for theater, and it kind of became my focus since. My work got fairly good reviews and hype. I was even interviewed for the college’s radio project, and featured in a senior piece this past year, a year after my own graduation.
I left college in Vermont with a strong sense of pride and faith in myself. As the months went on, however, that sense faded greatly. I struggled to find jobs, found hanging out with people to be more of a chore than before, and just had a general feeling of despair. I remember thinking “how am I ever going to function in this world?”
Eventually, I decided to go looking for help. I posted to WrongPlanet.net, a forum for people on the spectrum, and a site I did research on my senior year, but never actually made a post in. In mid-December of 2012, I made a post asking people how they went about getting jobs in NYC and dealt with unemployment. I also linked them to my solo performance (featured above), in an effort to show them what I was about.
About a week or two later, I got an email from a mutual friend of Andy and myself, who said he wanted to talk to me. The story goes that Andy was browsing WrongPlanet, came across my post, and clicked it on a whim. He, thankfully, found my piece relevant and wanted to contact me. However, I never posted any sort of contact information on the video, so Anushka, in her own words, “internet stalked” me, and found my LinkedIn, which pointed them in the direction of our mutual friend. Next thing I knew, I was meeting him for dinner and discussing being on the spectrum. The conversation ended up going fairly well, and Andy mentioned a workshop in Iowa he was doing within the coming weeks. As it turned out, because I didn’t have a job to go to, I was able to come along on short notice and work with them.
In other words, it was because I was unemployed that I was able to act on this chance. I’m not advocating unemployment by any means, I’m simply pointing out the serendipitous nature of the event.
Iowa went quite well, and a week prior to the writing of the post we presented the piece in NYC in an effort to gain funding and awareness for our work. The interesting thing about working on this piece is that you find it constantly evolving and addressing new issues every time you walk in and work through it. Andy and Anushka have really started to capture what it’s all about, and I’m just glad I get to contribute in some fashion, whether it’s giving my own “expert” perspective on things or acting for them.
Truth be told, I’m not quite sure what I want to do with my life. I want to act, and I want to contribute to the autism society of which I’m a part. Those two are the only sure things in an ocean of uncertainty. For now, I’m going to continue contributing to Square Peg, and take everything else as it comes. And, for now, I’m quite all right with that.