Thursday, November 1, 2012

Nightengale Autistics Speaking Day, 2012

Autistics Speaking Day, 2012 by Nightengale on Nightengale of Samarkand LiveJournal

A few years ago, someone proposed to raise autism awareness, a sticky topic in and of itself, by asking people not to use social media for a day. The idea was that avoiding a form of communication would promote empathy for autistic people who can't communicate. It's not clear if any actual autistic people were involved in creating this idea, although Temple Grandin's name is mentioned as a supporter.

Corina Lynn Becker, an autistic adult, proposed an alternative. Pointing out that social media can be an empowering form of communication for the autistic community, she conceptualized complete communication shut-down for neurotypical people, joined with an online media blitz created by autistics themselves. Thus was Autistics Speaking Day born.

Because there are definite communication challenges faced by autistic people. Some have no reliable method of communication. Some are non-verbal but communicate by typing, signing or other alternative methods. Some have communication abilities which change dramatically depending on circumstances. Some of these communication challenges can be improved, or their impact lessoned, through therapy, technology or creativity. Some can't, or at least, we haven't yet found a way to improve them.

But there is another communication issue which faces even those autistics with relatively strong language skills.

Because communication does not occur in a vaccuum. If I start talking right now, sitting alone in my living room, I am talking but not communicating. I can exercise the full extent of my vocabulary, modulate my voice and pay meticulous attention to grammar and still not have communicated anything whatsoever. My typing for the past hour is not communication until I press “POST” and someone else stops to read. The catchphrase is “communication partner.” It takes at least two people to communicate, whether the method be oral, signed, typed, pictoral or otherwise. And many autistic people lack willing communication partners.

In the past week, I've read about a panel about autism being held at a Sci-Fi con which has not invited any autistics to speak. And I've read attempts to silence an autistic person who questioned this decision, rather than to recognize the mistake and seek out an autistic voice.

In the past week, I've read about a conference being held on autistic self-determination which does include autistic speakers. However, it offers registration merely to "Parents" and "Professionals"

In the past week, I've read an article about the impact the new autism diagnostic criteria will have on the parents and caregivers of people with autism, without ever mentioning the impact on actual autistic people.

None of these situations exist because autistic people cannot participate on panels, attend conferences or give quotes for newspaper articles. Some autistic people can do those things, and some can't.

These situations exist because autistic people are assumed to be unable to participate on panels, attend conferences or give quotes for newspaper articles, and in some cases, are actively thwarted in their attempts to do so.

And yet I've seen a glimmer of hope. I've seen a conference where "person with autism" is one of the registration options. I've seen a conference where non-verbal autistic people were able to participate, due to a combination of technology, support workers and a willingness of the audience, autistic and neurotypical, to become partners in this less familiar form of communication. I have seen articles about autism which actually quote autistics.

And all over the internet, I see autistics communicating. With each other, with parents of children with autism, with other interested neurotypicals.

So communication can happen. Verbally, electronically, pictorially, communication can happen. It's just far too rare. And it takes too much fighting. And the ultimate irony is the proportion of that fighting which falls on the shoulders of those who have neurologically based social communication challenges.

In a few weeks I am giving a talk to a group of pediatricians and trainees about the health needs of children who have autism. And in addition to giving medical statistics and information about community resources, I plan to quote autistic individuals whenever possible. Because we need to normalize the idea that autistics should be involved in conversations about autism. To borrow a phrase from biology, having a voice (verbal or otherwise) is necessary but not sufficient. It takes two to tango. And it takes two to communicate.

Autistics are speaking. Why is it so hard to get others to listen?

And with that, I'm going to go listen to a range of autistic voices over at Autistics Speaking Day 2012

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