Friday, September 9, 2011

The Beginnings of Autistic Speaking Day

Corina Becker
autisticsspeakingday.blogspot.com

It started sometime mid-October last year.  I was browsing the internet, following links off of Twitter to new places I hadn’t been, when something caught my eye. A new autism awareness campaign, it advertised itself as a way to raise money for charities around the world and for people to understand autism better. Curious, and ignoring the growing dread in the pit of my stomach, I clicked the link and took a look. 

What I found was Communication Shutdown, an event started by a group in Australia that promoted people to refrain from going on social networking sites such as Facebook and Twitter for one day, November 1st. It said that it would help people to understand the communication difficulties that people with autism struggle with, and this will help people to know autism better. Also, for a $5 donation, people would get a charitable app to send out tweets and status updates throughout the day on why people were being silent for the day, and the money would go to certain autism charities in people’s own countries.

Let me just tell you, as an Autistic person who uses Twitter extensively for pretty much everything, I was not impressed. As I wrote in my post on October 15th, Real Communication Shutdown, there are many issues with the campaign, beginning with the sensory-overload design of the website, and going on to the basic assumptions made by the organizers. To quote myself:
"... it relies on the assumption that everyone participating uses Twitter and Facebook to communicate.  While I realize that these sites make communication easier, it is not the only way in which NTs can communicate online, and thus subverts the entire exercise of the campaign.
"I was recently asked by a person on Twitter to participate, and I responded that there wasn't much of a point, since I am Autistic, and do not require to learn about difficulties that I myself face in communicating. I pointed out to this person that Twitter and Facebook are two of the sites that actually allow Autistics to communicate and connect with others in the community, so I will not be disappearing from the Internet, as it is my lifeline. I also remarked that this is a flawed simulation, since a non-Autistic person still have the capability to text on their phones, and speak verbally, and so would not be totally comprehending the true reality of Autistic disability."
I went on to suggest that a better way for Communication Shutdown participants to simulate the full extent of the possible communication difficulties Autistic people face: a complete and utter communication disconnection. No internet, no phones, no texting, no note writing, no speaking.  Nothing.

Do not communicate at all, and maybe they'll understand the frustration that causes Autistics to lash out, to hit, bite, scream, and all the other "bad" behaviours that just get blamed on autism. That's what I thought, but then I realized the simulation was flawed. Even if people were to resist the temptations to cheat, it would be too easy for people in an uncontrolled environment to come to the wrong conclusions. Without someone controlling conditions in the simulation, and then providing a structure for feedback and to guide responses towards the purpose of the simulation, it would fail. A simulation, in all honestly, isn't to convey the reality of others perfectly; it's impossible to do so due to the wide spectrum of unique people on the spectrum specifically and in humanity in general. A simulation is to present a piece of a reality in a way that another person who does not normally experience that reality can in part understand the reality of others.

Therefore, as a large-scale simulation, Communication Shutdown will be a failure.  Never mind that in this tech-savy, media-driven generation, there will be an enormous pressure to at least sign in and message to people privately. In fact, given how addicted youth seem to be to their electronic devices, it was basically guarenteed that there would be participants who still signed in during Communication Shutdown.

Knowing this, I impulsively proposed that non-Autistic people be silent and that Autistic people be as loud as possible on social networking sites. I called for "Real Autism Awareness," for Autistic people to:

use this day to flood every social networking site we know with our accounts, our experiences, what it feels like to be Autistic. Every sensory pain, every communication frustration, every account of being bullied, every wondrous moment, every peaceful calm, every instant of understanding and joy.  Let them hear our voices and take back the autism community.

In my next post, I realized other Autistic people felt the same way as me, and I took it one step further from a proposed alternative, to an actual alternative. Whimsically calling it Autistic Speaking Day, I expanded on the purpose of what would come to be known as ASDay: to acknowledge our difficulties while sharing our strengths, passions, and interests, with the intent of raising autism awareness and battling negative stereotypes about autism.

I published the post on October 18, and then started to tweet links to it at a fairly consistent rate. To be honest, I did not expect that much would come from it. I was prepared to write a short post on my blog, linking to my past post and not saying much else other than I was sitting on Twitter, sending out tweets about my life as an Autistic. I really did not expect the responses I got.

I got some responses from someone running Communication Shutdown, but her comments did not satisfy me to call off my counter-event.  In fact, it made me angry and I began to be more aggressive with my promotion of ASDay.  I got some criticisms from other people as well, which I addressed later in a blog post, especially after I noticed ASDay gaining a lot of attention. It seemed that some people were unable to comprehend that 1) ASDay wasn't just about countering Communication Shutdown, but had the purpose of promoting Autism Awareness in our own way; 2) that we weren't asking people to donate money to anything; 3) that even people with the right intentions can make mistakes and those intentions do not excuse them from criticism and protest from the Autistic community; and 4) that all Autistics of all ages and "ability"  levels can participate..

But what amazed me was the flood of support, agreement and pledges to contribute.

Apparently, I wasn't the only one who felt there should be an opposite of Communication Shutdown.  Browsing other blogs, I became aware of other similar events.  I decided that it didn't matter what each of us were calling it, but that we were all doing the same thing, with the same goals in mind.  So I thought we might as well work together, and agreed to dedicate a few hours here and there with the other campaigns online. I still thought that ASDay would just be me and maybe a few others, tweeting obsessively throughout the day.

Until Kathryn Bjornstad commented on my blog with the Facebook link, I had no idea how big my idea had gotten. After clicking on the link, I think I just sat there for at least half an hour, stunned at how many people had already joined up to participate. I don't think I can accurately describe the feelings of jubilance I felt, and success. In a way, just by having so many people say "yes, I will not be quiet, I will speak up" made ASDay a smashing success before it even began.

It was then I started to realize what I had started. I felt electrified with energy and a rush of excitement. I remember a point where I thought "It's just not me, so now I can't slack off." And so with my next entry, I started to get to work, making logos to spread around and getting involved with the Facebook group. Someone made a twibbon of it, and another person suggested the hashtag #ASDay when I realized that my original tag #AutisticsSpeakingDay was really too long. I also addressed the criticisms, which I mentioned above.

As November 1st got closer and closer, I became more and more busy. Both Kathryn and I were contacted by news networks, including ABC News (Australia), 4ZzZFM News, Examiner.com, and the Washington Times for interviews through email or just to have permission to quote what we've already wrote. I was also asked by Steve Silberman, investigative reporter for Wired magazine, to write a guest post for ASDay on his personal blog. Between this and moderating the ASDay pages, I ended up not having time to write a detailed post for ASDay and simply picked out what I thought were some of my best blog posts.

I spent the day on Twitter, something like twenty hours straight, talking to people through tweetchat on the CoffeeKlatch, or on my own. People would contact me with a blog post they had done, and I'd share it on Facebook for the large list Kathryn compiled. I tried to read them all.  The sheer amount of people openly talking and sharing information, and the responses throughout the day still amaze me. The goal of ASDay was to get people to learn about autism directly from Autistic people, and it was working.

From what we could track, we had over 500 participants from all over the world from as far as Indonesia and Turkey, over 80 blog posts, and we were messaging blog posts to over 2000 people who were invited to the event on Facebook alone.  We have no clue how far the event reached just by "word of mouth" over the Internet.

As ASDay started to come to an end, we started getting an incredible about of feedback. I was very pleased by the responses from parents, family and professions about what they had learned from the day. As Jeanne Holverstott put it in a lovely post,
"#ASDay became more than just another day. It was a large-scale dialogue about daily struggles, successes, and challenges that we didn’t know about, couldn’t guess about, and, perhaps, never dreamed of. Lifetimes of day-to-day experiences congealed to document what it’s like to be a person with an autism spectrum disorder. #ASDay was a living, breathing, and talking personal and community history book with pages filled by unsung heroes with powerful stories."
We also started getting responses from Autistic people. The thanks and success for putting ASDay together I defer; the success of Autistics Speaking Day is not mine alone. It is the combined efforts of everyone involved, even in the smallest of tasks. It is a beautiful expression of community.

However, that is not why we immediately decided to run ASDay again. There was another result of ASDay that we hadn't quite anticipated, but was definitely welcome: empowerment.

Throughout the blog posts and feedback responses, we realized how much ASDay was an inspiration for a lot of Autistic people. There have been people who have started blogging, and continued blogging, from this event alone. Other Autistics who already blog felt encouraged to be open about their diagnosis and blog regularly about their lives as Autistic people. On several accounts, Autistic youths have felt empowered to start getting involved with their local autism organizations and become active in the autism/Autistic communities.

When I read these responses, I cried. I still cry when I think about them. I'm awestruck at how ASDay impacted people with such a resounding effect. Through these responses, I've realized the value that ASDay had to other people. For me, it was just another awareness campaign, one of the many I've participated in since becoming an active member of the Autistic community.  For others, this was the starting point for their own journeys and inauguration into the community as Autistic members.

Even though we started as an awareness campaign, ASDay has become so much more. It is a chance for involvement and support for many Autistic members, it is a source of empowerment, to be able to speak and express oneself and know for sure that there are people listening. It is a chance for communication within our communities, to share information, our experiences and our lives.

With this in mind, Kathryn and I decided to continue running ASDay each year, for as long as there are Autistic people who want it to keep going. This year we decided to plan a little more ahead than the impulsive rush we did last year. We're using social media and word of mouth again as our primary means of organization and advertisement. We opened up a blog so that we can compile all contributing blogs into one place, as well as a new Facebook page and a Twitter account.

We may not be a counter-event to Communication Shutdown anymore, but the rest of our goals for ASDay have remain the same: To raise not only autism awareness, but also acceptance, and to battle negative stereotypes about autism by advocating for the inclusion of Autistic people in the community, and offer a forum to broadcast the messages of Autistic people and non-Autistic allies to as many people as possible. We welcome Autistics of all ages and "functioning" to participate in sharing their stories and messages, in whatever form is the most comfortable to express. We also welcome our non-Autistic allies to share in this day of respectful community and communication.

We hope that all of you will join us on November 1st!