This week, Sia released the trailer for her new film, “Music,” about a nonverbal autistic woman played by the nondisabled Maddie Ziegler. This is nothing new. We know that 95% of the dismally few disabled roles that exist are currently played by nondisabled actors despite the fact that 20% of the population is disabled and 1 out of 54 people are autistic.
So, if this is the norm, why is it such a big problem?
First, let’s look at Sia’s response to the autistic community, and then let’s look at the real-world difference that authentic representation makes in employment.
Sia responded on Twitter to several of the professional autistic actresses who dared tweet to her that neither they nor any of the professional autistic actresses they knew had been auditioned for the role, writing to one of them, “Well maybe you’re just a bad actor.”
I know how this feels. I was the first autistic actor to play the autistic character Christopher Boone in the Tony Award-winning play “The Curious Incident of the Dog in the Night-Time.” This also made me one of the first autistic actors to play any autistic role ever professionally, as the roles in “Rain Man,” “I Am Sam,” “Atypical,” and all the way to “The Good Doctor” have been played by nonautistic actors.
When I was advocating for autistic actors to be auditioned for the role of Christopher, I was told many times that it would not be possible for an autistic actor like myself to play him. That it was a “big show” with “big words.” That it was a hard role. I was also told many times that the reason no autistic actors had been cast in the role was simply because there were no talented autistic actors. This is a lie. This is a myth. And it is damaging.
I am a talented autistic actor who has been told to my face the exact same words that Sia tweeted to the autistic community. And I am not alone. There are so many incredibly talented autistic actors. But why take my word for it? After being cast in “Curious Incident,” the same people who told me that it couldn’t, or even shouldn’t, be done changed their minds.
When I played the leading role in “Curious Incident,” The New York Times said, “Mr. Rowe plays Christopher with an agile grace, an impish humour and a humanising restraint. On Broadway, where the play was a Tony Award-winning hit, it ran eight times a week, with two actors alternating the demanding role of Christopher, a 15-year-old with autism who sets out to solve a mystery. Mr. Rowe — thought to be the first openly autistic actor to play the role — does all nine shows a week.”
“My job as an autistic is to make you believe that I am coming up with words on the spot, that this is spontaneous, the first time the conversation has ever happened in my life; this is also my job onstage as an actor.”
When I got to play the title character in the Tony Award-winning play “Amadeus,” The Wall Street Journal said, “Buy your ticket now, then come back and finish reading this review ... I don’t know that I’ve ever seen a better small-screen version of a live stage performance ... Mickey Rowe giving a madly zany performance as Mozart. He reminded me at times of the young Jerry Lewis ... A triumphant demonstration... Artistically successful in every way.”
And they weren’t alone! The reviews kept coming.
I am a better actor because of ― not in spite of ― my autism. Autistic people use scripts every day. We use scripting for daily situations with predictable outcomes, and stick to those scripts. My job as an autistic is to make you believe that I am coming up with words on the spot, that this is spontaneous, the first time the conversation has ever happened in my life; this is also my job onstage as an actor.
For instance, at a coffee shop:
Me: Hi, how are you doing today? (Smile.) Can I please have a small coffee? Thank you so much! (If it seems like more conversation is needed) Has it been busy today?
Barista: Any barista response.
Me: Oh yeah? Is it nicer when it’s busy or when it’s slow? Have a great rest of your day!
Always stick to the script. It makes things infinitely easier.
Or playing Edmond in King Lear:
Wherefore should I Stand in the plague of custom,
And permit The curiosity of nations to deprive me ...
When my dimensions are as well compact,
My mind as generous, and my shape as true ... [?]
It’s really no different. They’re lines I’ve learned that I say often, but I’m making you believe they are mine, particular to this specific moment. With autism comes a new way of thinking; a fresh eye, a fresh mind. Literally, a completely different wiring of the brain.
I know what it is like to be really good at something but still be overlooked simply because of stigma and bias.
Being in front of an audience of 500 or 5,000 people is very easy for me. The roles are incredibly clear, logical and laid-out. I am onstage; you are sitting in the seats watching me. I am playing a character, and that is what you expect, want and are paying for. The conversations onstage are scripted, and written much better than the ones in my real life. On the street is where conversations are scary — those roles aren’t clear.
Sure, there are lots of things working against me at any given time. For example, over 85% of college graduates on the autism spectrum are unemployed. I’m going to repeat that again ― 85% of college graduates who are on the autism spectrum are unemployed. This isn’t because we are less capable, but largely because of social stigma and the expectations others like Sia have before ever even working with us.
Like the fictional character whom Sia attempted to bring to life in her movie, I was nonverbal. I know what it feels like to be autistic because it is my lived experience every day.
I was nonverbal throughout my earliest years. It is such a damaging misconception that nonverbal autistic people don’t speak because they simply are not smart enough. We live in an inherently ableist society that uses the word “dumb” interchangeably with the word “stupid.” But when you take a moment to think critically about what society tells you is acceptable, you realize that just as “blind” means cannot see and “deaf” means cannot hear, “dumb” actually means cannot speak. I’m here to tell you that although I couldn’t speak, I was certainly not stupid, and I still understood everything everyone else was saying. This is the case for many nonverbal autistic people.
The medical term for this condition is aphasia. Simply put, it means you understand what is being said to you and you know what you want to say, but you are unable to say it. Somewhere between your brain and your mouth, the train goes off the rails. It’s not that mysterious and it’s not limited to autistic people. If anyone, autistic or not, sustains a concussion, they may show symptoms of aphasia.
If you put a communication application, even a keyboard, in front of a nonverbal autistic person, chances are they may communicate more eloquent and perceptive thoughts than you. It’s funny how the less we speak, and the more we observe and listen, often the more we have to say.
Do you think that Stephen Hawking was stupid, since he could only talk using a machine? Of course not! You recognize that he can be one of the greatest intellects in modern history while also being unable to talk without an assistive device. Please extend that same understanding to autistic people with aphasia. There are many things, dear reader, I hope you take from this article, and one is that you decide today to make an effort to stop saying “dumb” when you actually mean to say “stupid.” Do it for childhood Mickey, who knew what everyone else was saying, knew that he couldn’t speak, but knew what he wanted to communicate and find human connection and was determined to do so.
Out of this determination I invented my own incredibly detailed sign language with which to communicate. Obviously, this wasn’t ideal, but it at least allowed me to scrape by when with my immediate family, who, despite any despair over my inability to talk, were fairly familiar with my signs. Once I signed asking for an ice cream cone and as soon as I got it, I promptly squished it into my beloved grandmother’s face, my attempt at “sharing” it with her. Stories like that are a common thread throughout my life. Reaching for human connection, trying to make a moment of friendship and love, but not quite pulling it off. My made-up sign language was a desperate reach to connect with the world, and yet I remained cut off from communication with anyone outside of my immediate family. All of this is what is called lived experience.
“We don’t just want to be audience members. We want to be employed. We want to be active parts of the conversation about autism. We want to help shape the stories about us from the inside just like any other minority group would want to have a hand in telling the public stories that shape public understanding about their group.”
So why is representation important? With 1 in every 54 Americans being autistic, if you are doing a show that in any way involves autism, you’d better be casting an autistic actor or hiring an autistic writer or director. Disability still is not thought of when we talk about diversity, and that needs to change.
We don’t just want to be audience members. We want to be employed. We want to be active parts of the conversation about autism. We want to help shape the stories about us from the inside just like any other minority group would want to have a hand in telling the public stories that shape public understanding about their group.
Young people with disabilities in this country need to see positive role models who will tell them that if you are different, if you access the world differently, then we need you! The world needs you! Excluding people with disabilities from stories that are entirely about disability doesn’t help to accomplish this. The point of storytelling is to connect us with people we otherwise wouldn’t come in contact with, to bring us life experiences we don’t already have. That is why diversity in the arts matters.
Inclusion in the arts matters because it leads to inclusion in life. If even movies entirely about autism can’t include autistic people thoroughly and directly from the inside, that just means that we still have lots of amazing work to be done.
As the first actor on the spectrum to play Christopher, and one of the first actors on the spectrum to get to play any autistic character ever, I got to show all the business leaders that saw the show that they can hire us, that we can do professional work at the highest level, that we get the job done, and that they have no reason to discriminate against developmental disabilities.
And to those of you reading this who are on the spectrum or different in any way, what I ask of all of you today is this: Know yourself well. Know yourself well enough to understand that your differences are your strengths. Be brave, jump in headfirst even when you aren’t sure, and be brave enough to advocate for yourself when you need something. Will you fail? Of course! Sometimes! But will it be worth it? Yes. If I hadn’t been brave and taken leaps I was afraid to take, I would have never gotten to be on stage in “The Curious Incident of the Dog in the Night-Time.” So please be brave, ask for what you need, and trust that sometimes if you take a leap, the net will appear for you. Go be incredible, and more than anything, be you!
There are so many actors on the spectrum. Actors like myself, Emi Tatsumaki, Coby Bird, Tash Baiguerra, Carsen Warner, Alex Plank, Kayla Marie Cromer, Andrew Duff, Alex Stewart, and so many more.
Mickey Rowe (he/him) has had a prolific and varied career as an actor, director and public speaker; now highly sought after both nationally and internationally. He was the epicenter of significant publicity when he became the first autistic actor to play Christopher Boone, the lead role in the Tony Award-winning play “The Curious Incident of the Dog in the Night-Time.” This also made him the first autistic actor to ever play any autistic character in a professional performance setting. He has appeared as the title role in the Tony Award-winning play “Amadeus” and more.
Mickey is author of the book “Our Differences are our Strengths” and was the founding Artistic Director of National Disability Theatre, which works in partnership with Tony Award winning companies such as La Jolla Playhouse in San Diego and the Goodman Theatre in Chicago and more. NDT productions re-imagine disability and universal design as key storytelling and design elements showcasing that people can be successful not just in spite of their challenges, but also because of them. National Disability Theatre’s productions feature only professional artists, artisans, and designers with disabilities. For more from Mickey, visit his website, www.mickeyrowe.me and find him on Facebook, Twitter and Instagram.