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.
© 2010 by Rachel Cohen-Rottenberg
Pfew, I’m glad you’ve convinced me that this was a bad idea! In the first paragraph I was having cold sweats at the thought of shutting down facebook and twitter for a day… (hmm, should probably see to that).
Seriously:I was under the impression that for some people what was difficult was face to face social interaction, and talking, and that internet forums, etc were actually their preferred style of communication. And I understood that this applied to at least some verbal people on the autistic spectrum!
About charity, though, I have a friend who has recently raised some money for the centre her son goes to. It’s under founded but does really good work helping little autie kids learn to speak. Of course, it should receive enough from the state – but given it doesn’t, is charity objectionable?
Thanks for another great post !
Amen, sister!
My first reaction as I started to read this post was “What!!?? Stay off the social networking sites? They’re how many autistic people keep from being isolated!” It just shows how ignorant some people are.
[...] This post was mentioned on Twitter by codeman38, Emily Willingham. Emily Willingham said: http://bit.ly/aSEL3f "If people want to raise #autism awareness, all they have to do is listen to autistic people." http://bit.ly/9bPwMd [...]
It’s exciting to see the Autistics Speaking idea gaining traction. I plan to speak up, loudly and clearly. And flooding with links will go along nicely with this.
Again, what you have written is said so well that all I can do is nod in agreement, especially the part where you said, ““If we’re talking ABA, I’m outta here.”
This action is so wrong-headed, it’s unbelievable. I’d be really concerned about how the money is used. There are just too many organizations that don’t have a clue, as they don’t have any autistic representation.
Myself, I avoid Facebook, because of abuse and lack of privacy issues, and though I’m on twitter, I usually don’t make good use of it. But I will, I could sit here all day and tweet links to great autistic-written essays. Let’s make them listen to us!
What a beautiful post this is. I have been “coming out” as an autistic in the past couple of months to my colleagues and it has gone pretty well (except the occasional “So does this mean you are slow?” comment). Now I want to share this with my students. If you don’t mind, I will print out this amazing post (attributing it to you, of course) and hang it on the door of my office.
Clarissa, I’m honored! Please, feel free.
And for everyone, here is a list of other blog posts critical of the Communication Shutdown:
Communication shutdown for autism a bad idea at Indigo Jo Blogs
Why Communication Shutdown Day is a Bad Idea (and What You Can Do Instead) at Woman with Asperger’s
Speak Up on Shutdown at Astrid’s Journal
No, I’m not going silent for autism at A life less ordinary
Autistics Speaking Day at Katy Doesn’t Live in Smithton
Autistics Speaking Day at Action for Autism
[...] here, here and [...]
I first read about this misguided idea at A life less ordinary and I agree w/much of what you’ve written. Since the intended purpose of the exercise is for nts to experience what autism is like (and, yeah, I don’t see how that works), I’ve decided that as someone who doesn’t have autism (I wouldn’t call myself nt, because I have plenty of other differences), I will take the day to donate my social network presence to others’ voices. I will post quotes and links from some of my favorite blogs written by people on the spectrum.
Great how you articulate things Rachel!
Zellie: I love your idea!
Sandrine, to answer your question: I object to the word “charity” in general when describing non-profits that serve a particular cause. To my mind, it carries connotations of paternalism and pity. Others may have a different response. Of course, the irony is that if people wanted to act in a spirit of caring (caritas) with regard to us, they wouldn’t try to shut us up so much.
Zellie, I’m with Isabel. I totally love your idea!
And to everyone, thanks for your comments so far. I had the feeling we’d have a meeting of minds on this issue.
Wow, wow, wow. Such a strong and articulate statement about Communication Shutdown Day and Autistics Speaking Day. *applause*. I found your post through a link to mine (I’m Woman With Asperger’s), and I’m glad I did.
Let our voices be heard on November 1!
-Nicole
Hey Nicole, great to see you here! Thanks for helping to spread the word.
http://www.examiner.com/special-needs-kids-in-nashville/communication-shutdown-day-is-answered-with-autistics-speaking-day Rachel, you’re quoted on this page!
I know you don’t use social networking sites yourself, but I was hoping I could include your blog in the Facebook page I’ve created for Autistics Speaking Day, so people could hear what you have to say. You’ve been a wonderful influence on me and I would very much like to include you, but it felt wrong to do so without your permission.
Hi Kat,
Thanks for your kind words. And yes, please use my blog on the Facebook page! I’d appreciate it very much.
BTW, the quote attributed to me in the Examiner article isn’t something I said. It’s a great quote, and I totally agree with it, but whoever said it should get the proper attribution. I’ve emailed the Examiner writer so that she can correct the mistake.
I’m sorry about that, I just talked to her and I told her it was my probably poor attempt to paraphrase what you had said. I’m a history major and I’m used to providing evidence for even paraphrased material. I was worried that I had offended you but I’m relieved that doesn’t appear to be the case. I really wanted to directly quote your post because you said some awesome things, but I was trying to convey the ideas with a limited amount of space. I thought paraphrasing would help keep it more concise. I can change it in the actual Facebook page if you would prefer, just for clarity’s sake, or mention that it’s caused some confusion.
I’m adding you to the list as we speak. Thank you for letting me add you.
I think I’m going to change it to say, “To paraphrase Rachel Cohen-Rottenberg’s post, saying that we are silent…” instead.
Kat, thanks for clarifying, and no offense taken. Modifying the FB page to state that you’re paraphrasing what I said seems like a good solution. I’ll send Gaynell a link to my post and see whether she can find something in it she can quote directly.
Update: Gaynell changed the article to clarify the paraphrase…and she included a link to my post!
[...] Rachel Cohen-Rottenberg: Speak Up On November 1! [...]
This would be a good video to post on Facebook on November 1:
http://www.youtube.com/watch?v=JnylM1hI2jc
Rachel,
Totally agree with both you and Corina. In fact, I have two post up saying the exact same thing. I think I may even have pipped Corina to the post with my first one. I don’t know if you will be able to view my blog, as some people get a 403 error.
PS: “Running an autism organization without any actual autistic people in it is like running a synagogue without any actual Jewish people in it.”
QFT.
[...] various autism chairites. There has been much criticism of the scheme here as well as on various autistic/Asperger’s blogs, about the fact that going without Facebook et al for a day doesn’t [...]
Written with your usual clarity, logic and power!
I’m still new to the autism community so I don’t yet understand all that is going on but it does seem frustrating that some people would presume to speak for a community without consulting the community.
[...] And if we are going to listen to autistics speaking you do not have to wait until November 1st. Rachel Cohen-Rottenberg makes an eloquent case for autistics speaking on her blog, Journeys with Autism. [...]
Isabel: Great idea!
Julian and Born2bme: Thank you!
Thanks Rachel, for your usual clarity! As the parent of an aspie and an active facebook user I started by scratching my head on this one (“communications shutdown”) and then just got really pissed at not just the audacity of the idea, but the offensiveness of it. As the saying goes, “What were they thinking?!”
Barbara: “What were they thinking?” indeed! Do they even know what “shutdown” means to an autistic person?
After a weekend of thought, I think they might have something here. If we could all the folks who opose the concept of acceptance and respect for people with autism to stop communicating for a day because the giant autism charities tell them so, what is the downside? I see a cottage industry emerging here. If this works well maybe we can do more we could have a mismatched sox day so folks can get a feel for what it is like to be an amputee or turn off your computer screen day to appreciate blindness! The possibilities are endless and society can finally communicate the message to disabled people everywhere “the only reason we tolerate you is because the government gets extra fines from your reserved parking and union labor is required to install ramps and handrails, and you create special ed jobs for teachers.”
Did you see that Stagliano is all excited about going silent? I just don’t get how someone with 3, count ‘em, 3 kids on the Spectrum, who have some degree of limited verbal ability can possibly think this is going to help people understand what it’s like to be in their shoes for a day.
I’ve decided this is actually more like asking people to go live back in the 90′s for a day. I would have said 80′s but they’re not asking us to turn off our computers, just stay off of social networking. That’s not an exercise in understanding communication problems.
I like what Dan said yesterday. It’s like asking people to wear mis matched socks to appreciate what it’s like to be an amputee.
Dan and Laura: Yeah, in general, simulation exercises end up going awry (in that they tend to evoke pity rather than empathy), but this one is especially ill-conceived. As Mike wrote on the Action for Autism site: “The internet has been embraced by autistic people in order to overcome their social isolation. If I switch off my social networks I am shutting out all the autistic people with whom I communicate every day…It is a bit like saying that, in order to appreciate the mobility problems faced by people in wheelchairs, we will avoid the lifts and use the stairs instead!”
Very effective counter-argument against the shut down. I put a link to your blog on my FB page.
http://www.facebook.com/pages/Words-4-Autism/323956325331?ref=ts
[...] Cohen-Rottenberg blogs at Journeys with Autism. Speak Up on November 1st! appears [...]
Hi Rachel! As I often do, I’m keeping a list…in this case, folks who are speaking up on November 1. You are #4 on the list.
http://lizditz.typepad.com/i_speak_of_dreams/2010/10/why-i-wont-be-shutting-down-on-november-1.html
Twitter users can follow two hashtags #AutisticsSpeakingDay (for people with autism participating in social media on November 1) and #AutismShoutOut (for autism allies on the day)
The Coffee Klatch (TCK) will be hosting a 24 hour autism event: Communicate to Educate
http://tweetchat.com/room/tck
About your objection to “the word “charity” in general when describing non-profits that serve a particular cause.” I think it is a UK usage — they tend to use “registered charity” where USians would say “non-profit”.
Gilda and Liz: Many, many thanks!
What is wrong with ABA?
MissJ: Please see “The Misbehaviour of Behaviourists: Ethical Challenges to the Autism-ABA Industry” by Michelle Dawson at http://www.sentex.net/~nexus23/naa_aba.html.
No disrespect Ms. Cohen-Rottenberg, but if this is all you have to base the ineffectiveness of ABA therapy on (a 2004 article about a 1987 experiment), the argument seems a little weak. In 1987, we didn’t have the internet- I am sure (based on your blog) many people couldn’t “live” their lives without it now. I am certain that there have been many changes in ABA therapy from then until now. As with any disorder, as strides are made and information obtained, methods are changed. As an instructor, could I run my classroom the same now as in 1987? Students have changed, parents have changed, technology has changed, the world has changed…. I am sure methods for ABA therapy have changed.
With this disorder, as many of your blogs, books, and links indicate, everyone is different. Every diagnosis is different. What works for one person may not work for another. But, it might. In a disorder where everything is a “might”, why not?
I understand that as an older person living with autism, it is simple to say, “I am glad I am the way I am”. As an obese adult, I can say, “I am comfortable with myself, fat or not”. But as a child, teen, and early adult there is nothing I wanted more than to fit in. I find it hard to believe that any parent would not do anything possible to have their child like others. Really, is ABA unlike anything parents do with typical children? No. I don’t want my child to touch a stove, so I slap it when she puts it up there. Is it ethical? Maybe not, will it save her hand, yes. Do I want my child to learn to play hide and seek so she can better fit into the classroom and social situations? You bet. Can ABA methods make that happen. They have. So, for my child, in my opinion, it has been a success.
I have read a lot of what you have written. As a mom with two girls that have ASD, I want to understand. I just feel that many times when being an activist it is hard to see the forest through the trees. It is like fighting for peace. I try to understand where you are coming from on a lot of things- but I have not lived it so I cannot ever fully understand.
MissJ, I should have been clearer about why I provided the link to the article. I did so because it explains my philosophical and ethical objections to ABA, not because it’s the last word on the subject or because I’m adducing it as evidence in support of an argument. You asked what was wrong with ABA; this article sums up my feelings. Of course, you’re free to disagree, and that’s fine.
[...] encouraging people to stop using Facebook and Twitter today to support autism awareness has been criticised by some people with autism. The “Communication Shutdown” has been supported by people with autism-related conditions [...]
I’m a journalist with 4ZZZ-FM community radio in Brisbane, Australia. After people on Twitter independently suggested the use of a #TalkAboutAutism hashtag to oppose the shutdown; I started digging around and found this blog post which led me to the counter-proposal.
This is a story I’ll be reading on air tomorrow morning (Australian time) about the criticism of the shutdown:
http://4zzznews.wordpress.com/2010/10/31/online-communication-shutdown-for-autism-awareness-criticised-by-autism-activists-talkaboutautism/
[...] something thoughtful about tomorrow’s Autism Shout Out / Autistics Speaking Day, but many others have already said it better than I ever could. Liz Ditz at I Speak of Dreams compiled a much more [...]
[...] tuning out, and dropping off the radar, they’ve joined up with Becker to declare November 1st Autistics Speaking Day — a day that people on the spectrum step forward to tell the stories of their [...]
[...] Now they probably do some good things to help families with children on the Spectrum. But their ability to do good is really hindered by the lack of input from people on the spectrum, Rachel Cohen-Rottenberg (leader of the Vermont Chapter of the Autistic Self Advocacy Network) wrote …. [...]
[...] first annual Autistics Speaking Day. In case you haven’t heard of Autistics Speaking Day yet, here’s a link to an excellent post about it from Rachel Cohen-Rottenberg’s Journeys with…, and here’s a link to the Facebook page for the [...]
[...] to Rachel Cohen-Rottenberg and her post at Journeys With Autism: Reports From Life on the Spectrum for inspiring this [...]
[...] I read an inspiring post from a young woman named Corina Becker calling for a counter-protest on November 1 that she called [...]