Is autism a different operating system?
This post is by Marc Sirkin, Autism Speaks Chief Digital Marketing Officer. This is the 2nd year Autism Speaks attended Maker Faire.
I spent a long, amazing weekend at the World Maker Faire in Queens, NYC this past weekend. The event for me culminated with a "talk" I gave about Hacking Autism, one of the programs I manage here at Autism Speaks. Along with the wonderful photos I have to share, I thought I’d provide a short summary of my talk and convey the feelings I had as I was standing on stage talking about the incredible intersection of autism and technology.
My talk focused on what is happening as autism and technology collide in surprising ways. At the core of my argument is a fact that surprised me deeply. According to several studies, many of people diagnosed with autism, no matter where on the spectrum they may be, are of average or above average intelligence. When I read the study I was surprised.
I asked myself why.
I didn’t really know.
What I came up with was disturbing. I started asking friends, neighbors and all sorts of people if this fact was surprising and just about everyone said yes. But why? Why do we collectively assume that those with autism (or any disability for that matter) are intellectually challenged?
As I started to think about what I wanted to say, I started playing with different iPad games and apps for autism. I read a lot of articles about game therapy and the latest innovations in robot therapy, autism research and more. I played with AAC apps, social story apps and lots more. I started to think to myself what it would be like to not be able to communicate the way the rest of the world communicates; and how isolating and frustrating that would feel. I allowed myself to get frustrated by that thought and it really bothered me. I imagined what it would feel like being smart and knowing what is going on all around me, yet being unable to communicate, or interact in positive ways.
But hey, I’m a tech guy, not an autism researcher or teacher. So I started reading and thinking about the Internet and about how ubiquitous and fast access has become. When I talked to Alex Plank, he flat out told me that the Internet helped him survive high school. I thought about the incredible advances in hardware like the iPad and how fast and light they are; as well as software that is becoming easier and easier to use. At some point in this journey I was struck like a lightning bolt with an insight.
Autism is being disrupted by technology like everything else on the planet. Industry by industry, from- filmmaking to animation, to game design & development, to math and science and beyond, technology is radically remaking the world of autism. This is creating massive opportunities for those with autism to find their passion, develop their skills and eventually compete for jobs.
I know that some on the spectrum can only dream of these opportunities. When I think of that, I go back to the data, the data that the majority of those with autism are of average or above average intelligence. What if they are intelligent but locked away from us; locked away from their parents, their friends and their communities. And what if it is the very technology that surrounds us that can enable someone with autism to find their way to live a better life, find a way to express themselves, or hold a job.
I realize how easy it is to criticize what I’m saying. There are some on the spectrum that have too many issues, their disability is simply too great. And some will say that without better medicines, none of this can happen. And others will ask where the research is, that they need proof that an app works a certain way.
But, I ask, what if autism isn’t a processing error. What if it’s a totally different operating system? What if I told you there was an app for that – and that app is our collective understanding?
After my talk, a man approached me. He literally came running up to me as I was questioning if my talk was any good; and if I was actually doing more harm than good. This man told me that his son has autism and that my talk inspired him and he thanked me. He shook my hand and walked away. I was floored and humbled. I remain inspired by the many families who came to Maker Faire and found us – families with young kids with autism, some non-verbal who were there looking for answers and ideas. I talked to so many different adult autistics that talked to me about their passions and their hopes and dreams. I’m on their side. I hope you are too.
The slideshow below includes photos from the Autism Speaks booth, which featured volunteers showing off iPad apps and demos from Popchilla and Romibo, plus shots of some of the cool stuff we saw at Maker Faire.