Neurodiversity

Speak Up on November 1st!

On November 1st, people all over the world are being asked to stay off social networking sites as part of a Communication Shutdown.  This initiative is the brainchild of an Australian organization called the AEIOU Foundation for Children with Autism.  To join, you make a donation to receive a CHAPP (charity app).  The CHAPP gives you a shutdown badge to wear online and adds your picture to a whole collection of photographs of other supporters, including celebrities.  (Wow! Celebrities!)  The donation you make goes to an “autism charity” in your home country.

In addition to raising money, the aim of the Communication Shutdown is to help people understand what it’s like to be autistic.  According to the website devoted to the initiative:

Social communication is one of the biggest challenges for people with autism.  By choosing to shutdown your social networks for one day, you will have some idea of what it’s like for people with autism who face this challenge every day.

Rachael Harris, a counsellor and supporter, who herself is on the autism spectrum, put it best when she said, “Electing to shutdown social communication mirrors autistic silence.  But it also draws attention to the isolation and intense loneliness experienced by those who are impeded from connecting socially with others.  The CHAPP is a powerful way to create a sense of empathy towards those on the autism spectrum.”

Whenever I hear ideas like these, I’m reminded of those Highlights magazine games where you look at a picture and start scanning for all the things that don’t belong there.  Where to begin?

First of all, what is the AEIOU Foundation for Children with Autism?  It’s an organization devoted to early intervention strategies for autistic children between two-and-a-half and six years of age.  Looking at the website, I can’t find any specific information about what those early intervention strategies might be.  If we’re talking ABA, I’m outta here.

Despite the lack of specificity about therapeutic strategies, I have no trouble finding information on the website about the people who run the organization.  And guess what?  Not a single one of them is autistic. Not one.  Running an autism organization without any actual autistic people in it is like running a synagogue without any actual Jewish people in it.  Of course, if they had autistic people running the place, they might not be raising money for such organizations as the National Autism Association, whose motto is “Think Autism. Think Cure.”

Which leads me to my next question:  If “electing to shutdown social communication mirrors autistic silence,” what is the source of that silence?  Is it that some autistic people aren’t verbal?  If so, our nonverbal fellow autists are certainly communicating in other ways:  through art, through writing, through nonverbal behavior. I thought non-autistics are supposed to be stellar about picking up nonverbal behavior.  When they’re communicating with one another, they use nonverbal signals all the time.  It makes up 90% of their communication.  It’s what we autists supposedly lack the ability to do.  But when we autists communicate by our behavior, well, that’s just a tragedy.

What’s the tragedy?  That people can’t speak?  Or that too few are listening?

Whether we’re verbal or nonverbal, does telling people to stay off social communication networks really create empathy for us?  The Internet is how we find one another.  It’s where many of us feel heard.  It’s where many of us feel most comfortable.  Staying away from any form of online communication will not draw attention “to the isolation and intense loneliness experienced by those who are impeded from connecting socially with others.”  We’re not impeded from connecting socially online.  And we wouldn’t be impeded from connecting socially in the rest of the world if people had a little more empathy for how we feel and met us halfway.  At any rate, it’s counterproductive to tell non-autistic people to stay away from online sites when so many autistic people overcome “isolation and intense loneliness” by connecting with one another online. How can anyone possibly develop empathy for us if they’re not even aware that we speak loudly and clearly in our online communities?

The big pink elephant in the livingroom, of course, is that autistic people are not silent.  Far from it.  We communicate all the time, just like anyone else.  But we are being silenced every day by the world we live in, and absolutely nothing about the Communication Shutdown speaks to the multitude of ways in which we are silenced:

We are silenced every time non-autistic people say we are silent.

We are silenced when “autism organizations” speak for us rather than including us.

We are silenced when the “autism community” isn’t led by autistic people.

We are silenced every time non-autistic people call each other “experts” and ignore the fact that we actually live the autistic experience every day.

We are silenced when people give to “autism charities” on our behalf, as though we are victims in need of rescue.

We are silenced every time we are ignored, in situations large and small.

We are silenced when people do not have enough empathy to invite us into a conversation.

We are silenced every time we are told we are “too sensitive” in the face of bullying, harassment, and social ostracism.

We are silenced every time that non-autistic people treat us as though we’re broken.

We are silenced by every act of disrespect, dismissal, and ignorance we encounter.

But we do not have to remain silent.  Corina Becker at No Stereotypes Here has a counterproposal:  Make November 1st Autistics Speaking Day.  She writes:

[O]n November 1st, Autistic people should speak up and be heard … [I]n the absence of NT voices, Autistics should reclaim the Autism community by communicating in our own ways on our life experiences … I would like the day to acknowledge our difficulties, yes, but also share our strengths, our passions, our interests, our “obsessions” … And so, for the intent of raising Autism awareness and battling negative stereotypes about Autism, I call that November 1st be Autistics Speaking Day.

Her proposal mirrors my initial response to hearing about the Communication Shutdown.  Flood the social networking sites with our voices.  Provide lots and lots of links to blogs by autistic people.  If you’re like me, and don’t use Facebook or Twitter, ask that someone you know publish a link to your best blog pieces.

Raise up your voices.  Let us be heard.

And for all of you who want to raise “autism awareness,” I have a simple solution:  Listen to us.

Rachel Cohen-Rottenberg blogs at Journeys with Autism.  Speak Up on November 1st! appears here

under the terms of this Creative Commons License.

Rachel Cohen-Rottenberg’s recently published memoir is The Uncharted Path: My Journey with Late-Diagnosed Autism.

Rachel Cohen-Rottenberg on 10/29/10 in featured, Language | 2 Comments | Read More