Autistics Speaking Day 2012

[nightengalesknd]

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

Comments

[teacup-werewolf.livejournal.com]

Speaking of Autistic voices....


I remember Corina starting Autistics Speaking (Paula Durbin-Westly is taking charge of it too) a few years ago ASAN even gave her an award for it. I wrote a post about the shutdown thing YEARS ago and I thought it was a pretty shitty and empty idea (hello slactivism), the counter effort however while has good intentions and is a good idea...feels a little gimmicky. Regardless what NT people think, everyday is Autistics Speaking day. Autistics don't just blog on Nov 1, they have always asserted their voices despite the deafening choir of descent. We will continue to speak, blog, sign, use PECS and hand flap. NTs shouldn't just read blog posts about bullying, gender, sex, stimming, employment, schooling, family only on Nov 1. They should make an effort especially if they have been affected by autism, to read those blogs daily and honestly, not comment. Just read. Just absorb. Autistic Speaking day shouldn't just stop on Nov 1, it should be everyday.

My other issue is that while it's great (and I just re-posted a blog post myself) it feel that it's only a drop in the ocean of issues and not actually helping fix the schism. It's great empowerment for autistics who feel their voices are taken away and this is just my cynicism here, in end NTs are going to continue to talk over us, talk to us like were children (when some are adults) make choices for us, and tell us that we can't love and then abuse us. Having some guy get warm and fuzzy after reading a post about an autistic girl and her boyfriend isn't going to stop him from telling his autistic co-worker to "stop being fucking retarded". It's not. Frankly, the responsibility honestly falls to the NT to hold themselves accountable. They need to police each other and start being aware of the amazing privilege they have. Until that happens, we might as well be yelling into the darkness.

Autistics are speaking. Why is it so hard to get others to listen?
Because simply NTs don't care. They believe to be the guardians of us, so their voices are more important. So the talk over us because they have our "best" interests at heart.

As for the post you linked, I remember that clusterbomb via a listserv that I am part of. It was a disaster and Kassi was pretty peeved over the whole thing.

[kittenmommy.livejournal.com]

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

I really don't know. I mean, if I want to know what it's like to be autistic, I'd ask someone with autism rather than an "expert". An "expert" probably knows an awful lot about autism, but s/he doesn't know what it's like to be autistic.

And again, we run into the "not allowed to grow up" thing that we see with CP. There are evidently no adults with CP or adults with autism, and if there are, we/they certainly can't speak for our/themselves!

Yeah.