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No, Thanks, Communication Shutdown: Awareness without the Auties and Aspies

05 Oct

I have read about the November 1 Communication Shutdown for several days now. “Can you get by without Twitter, just for 1 day?” to understand how difficult, if not nonexistent, social communication is for individuals with autism. The goal is awareness, the campaign is global.

Let me be honest, this idea hasn’t made sense from the get-go. Doesn’t Twitter (as well as other forms of social media) enhance autism awareness? Doesn’t Twitter et al bring the autism community together to communicate, to share, to commiserate, to learn on a grassroots level that cannot be matched in any other capacity? Why shut that down for one day? What happens to those diagnosed that day? Where do they turn?

I was (am) so confused by this idea that  I asked a Twitter friend who is on the spectrum to “check it out”: “seems counter-intuitive, but the design of the site screams they don’t expect autistic people 2b involved neway.” I feel like a traitor, but I don’t think I’ll be shutting down on November 1st. Will you?

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26 Comments

Posted by on October 5, 2010 in Educating the NTs

 

26 responses to “No, Thanks, Communication Shutdown: Awareness without the Auties and Aspies

  1. CorinaB

    October 5, 2010 at 5:14 AM

    **snort** hell no, I won’t. I don’t need to shut down my internet access to know what it’s like to communicate as an autistic. It’s easier to ASK us. As a global autism simulation, it seems rather silly.

    ‘sides, this is how I connect to people, meet people I’d never encounter before, pursue my interests and keep in touch with people near and far, including my parents!!!

     
    • jholverstott

      October 5, 2010 at 5:20 AM

      Therein lies the contradictoriness (not a word, I know) of this campaign. You are hurting/affecting the people you are trying to help. Someone clearly didn’t talk to individuals on the spectrum before they pitched this idea. I still feel weird for being “against” this. It helps that you agree, I don’t feel as crazy.

       
  2. Tam

    October 5, 2010 at 5:32 AM

    That was me you quoted, and I was hating Twitter’s 140 char limit on this one, I was hoping you’d blog about it so I could put a more complete reply here lol

    That website is an utter assault on the senses!! It was all I could do to last long enough to find the more info button… and even the non-swimming data there was hard to read.

    Either they weren’t expecting anyone with any disability (autism, eyesight issues, any kind of sensory issues, dizziness, epilepsy, etc etc) to visit the site/be involved, or they just didn’t use their brains at all when they put up this site… yikes!!

    Anyway, beyond that, the communication shutdown seems really stupid for the reasons you’ve pointed out. BUT I can see why they’re doing it. It’s a big-deal kind of thing. It’s visible. People will see their friends with a big slash through their profile pic and they’ll feel *guilty* if they don’t have one of their own, like they’re saying they don’t support autism.

    I find it hilarious that they’re giving people an out (you can still log in to your accounts and you won’t be outed for it)… so it’s *all* about appearances. They probably don’t really even expect anyone to avoid their accounts. They probably expect everyone to sit there all day trying to catch someone else having the audacity to post while they have a slash on their pic lol

    Plus, they get the funds by having you donate FIRST, and give money for the stupid ‘app’ that puts the slash across your profile pic. That means money upfront, and extortion money at that, because everyone’s wondering why Ann’s got autistic grandkids but doesn’t even have a slash on her profile. It’ll probably do really well as a fundraiser.

    It’s just shows very clearly they didn’t want any actual autistic people involved, and it’s kinda dishonest, and their designers need shot for creating a site that gives people seizures.

     
  3. Marianne

    October 5, 2010 at 5:37 AM

    Hi there

    Thanks for your interest in this fundraiser. I just thought I could jump in and clear a few things up. This is a voluntary shutdown aimed at raising awareness among the NT. We understand that the internet is a key tool that people on the spectrum like to use so we in no way want you to give this up. It is also a fundraiser, asking NT’s to donate money to organisations around the world that provide services such as early intervention therapy, advocacy and education.

    And yes we did consult with a number of people on the spectrum. Perhaps it’s best if I quote them directly:

    “I can remember the frustration of not being able to talk. I knew what I wanted to say, but I could not get the words out, so I would just scream. People will have some idea of what this feels like when they take part in Communication Shutdown.” Dr Temple Grandin.

    Rachael Harris, a counsellor and supporter, who is also 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 true sense of empathy towards those on the autism spectrum.”

    Thanks for reading. We in no way intended to cause any offense or confusion.

    Kind regards,

    Marianne Harvey
    Communication Shutdown Team

     
  4. Tam

    October 5, 2010 at 5:52 AM

    Oddly enough I told them through twitter about the sensory assault, and got this back: “our apologies for that. We are looking into this and hope to fix it asap.”

    So maybe they will improve that at least.

     
  5. Karen

    October 5, 2010 at 5:23 PM

    Holy Flash assault, I do hope they fix that aspect to the website.

    The ambivalence of the community to this action of silence is understandable. I think it’s better than a lot of the “speaking for” that goes on, and highlights a key issue, even for those of us who are verbal. Neurotypical frustration at not being able to communicate, even if simply self-imposed for one day, is a good exercise; not unlike some other disability awareness training workshops I’ve been to. Putting on oven mitts and trying to write doesn’t equal the experience of having arthritis every day, but it shifts perception, and that is useful.

    Idea: With spectrum folks still tweeting on Nov 1, the site could have a feed from twitter that raises autistic voices above the silence.

     
    • jholverstott

      October 6, 2010 at 2:59 AM

      Karen, I agree with your idea and I hope that a shift occurs.

       
    • Tam

      October 6, 2010 at 3:44 AM

      I kinda like the sound of raising “autistic voices above the silence” – and it could be cool if they incorporated that… except that would put autistic people ‘on the spot’ so to speak, and I’m not sure how many members of the autistic community would appreciate that…

      Would it seem like the world invited everyone to a pep rally on autism… told all the neurotypicals to be quiet, while shoving the autistics out on the stage and handing them mics?

       
  6. Tam

    October 5, 2010 at 8:23 PM

    Well, I might have been a little too strong in my dislike of the idea, I think I was still reeling over the sick feeling I got when trying to look at that swimming flash page. But I still stand by most of what I said (if not the harshness with which I said it).

    As much as I respect Temple Grandin, I don’t agree.

    First off, I don’t think most people will actually do it. I think they might donate (and this *will* probably be a good raiser of funds), and they might not *post* but that’ll be the end of it. They’ll still read, they’ll still chat, they’ll still play their games.

    Second, I don’t think anyone that actually does walk away from Twitter and Facebook for the day will have any “idea of what this feels like”, to quote Grandin. I believe even these will go on with their day, communication as normal, like nothing’s really changed. Or perhaps, even more likely, they’ll rediscover real-life communication they’ve been neglecting because their nose has been stuck in Farmville. They’ll be texting, on the phone, hanging out with friends, chatting at the water cooler… and many, many more of the things that autistic people find MORE challenging than using Facebook and Twitter!

    I think if the goal is to get money, this will do the trick well. If the goal is to “show people what it’s like” then this was a completely wrong move. Could a “communication shutdown” of another sort effect this type of empathy? Maybe. If the shutdown was in face-to-face, person-to-person communication, this might work. If people were forced to use alternative means of communication for everything, then perhaps the type of empathy they’re looking for would come out of it.

     
    • jholverstott

      October 6, 2010 at 3:02 AM

      Your idea reminds me of the “days of silence” vows. Do you think that would be effective? If would exactly what you suggested — searching for and relying on different forms of communication.

       
      • Tam

        October 6, 2010 at 3:22 AM

        Yeah… well, probably not. It’s not like you *can* force that on someone. And if it were voluntary instead of forced then they’d know they could still talk if they wanted to, so it wouldn’t really give them the empathy.

        It would, however, work about as well as the oven-mitt thing that Karen mentioned above…. which is much better than the FB/Twitter thing. It would be temporarily frustrating, and it would give them some idea of the struggles of trying to find alternative methods to communicate.

        I could see something like this working on a limited scale – like at a workshop or something. You could kind of force it there, and you could go further, doing things like banging pan lids next to someone’s head or shining bright lights in their eyes, or having a loud background buzzing in the room at all times… to give them sensory overload (lol).

        Of course that kind of thing isn’t feasible on a grand scale… unless your little facebook app were to cause a continuous buzzing and flashing lights everytime you tried to log in … hrm…

         
  7. jholverstott

    October 6, 2010 at 3:27 AM

    You might have given me an idea for my next class — I can do the “silence” simulation on a small scale. I, of course, won’t be asking for money for that silence.

     
    • CorinaB

      October 6, 2010 at 4:13 AM

      I did the vow of silence day in university. It was quite frustrating to try and communicate, but we kept to our vows. Especially since we made them voluntarily. And tied a white scarf with an x on it over our mouths.

      We did not speak a single word, but as we were English majors, we always had a pen and paper on us to pass notes back and forth.

      But yeah, afterwards, my friends commented on how much their took for granted the ability to speak. I looked them almost in the eye and said “and imagine living like that, for every day of your life, and that’s what it’s like to be non-verbal autistic”

       
    • CorinaB

      October 6, 2010 at 4:22 AM

      I used to help run simulations. flicker the lights, play loud and annoying music, have them stand in a circle with their eyes closed and tell them that they’re going to get a needle, and then randomly touch them with wet clothes and weird feeling things.

      Another exercise that we did was have a bunch of scribbles on pieces of paper, and they had to trace them by only looking in a mirror. As me and the other simulator-run watched, we jotted down the “inappropriate” responses, like nervous giggling, swearing, etc, and how frustrated they seemed to be trying to do something so seeming simple, but actually really hard.

      After that, the other presenter would give a bit of the usual explanation on autism, and then I’d get up and do a brief explanation of my own experiences. As most of the time we were talking to camp counsellors, I’d relate my experiences to my times at camp, both over night and day camp, give advice and answer questions.

       
      • jholverstott

        October 6, 2010 at 4:27 AM

        Corina, your ideas are great, mind if I borrow them? I especially like the idea of logging “inappropriate” responses. I hope it would be eye opening.

         
      • CorinaB

        October 6, 2010 at 1:55 PM

        arg, won’t let me respond to your comment, Jeanne. But yeah, it was a great eye-opener for them to realize that autistic behaviour and responses don’t come out of nowhere, that there is a reason that is completely valid even if they don’t always understand it. The hope then is to get them to understand it and how to help.

        As far as I can tell, go ahead and use it.

         
  8. Rose Wade

    October 6, 2010 at 6:54 AM

    Thank you all for your responses and insight. You gave me a lot to think about. I agree with some of the points you have all made.

    My own choice for supporting Communication Shutdown is based on having personally experienced what Rachael Harris has been quoted as saying: “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.”

    My best to you all,
    Rose Wade
    http://robinhoodautismfoundation.wordpress.com/2010/10/06/communication-shutdown-from-a-mom%E2%80%99s-point-of-view-2/

     
    • jholverstott

      October 6, 2010 at 4:57 PM

      Rose, Thank you for your thoughtfulness about this issue. I can appreciate the concept of drawing attention to the “isolation and intense loneliness” and I applaud you for engaging voluntarily in this campaign. I hope others are as thoughtful about it as you.

       
  9. Sunday

    October 15, 2010 at 4:46 PM

    I most certainly will not be shutting down on November 1st. When I wrote my blog post about the communication shutdown today I urged NT’s to consider doing something concrete with the day if they really want to make a difference in the life of those living with autism and their families.

     
  10. Kabie

    October 15, 2010 at 6:07 PM

    When I first heard about this I thought it must be a joke, it’s an oxymoron surely. Social media is so important for autistic people, many don’t have R/L outlets for in depth communication (friends), or is that just me? It all seems so counterintuitive, the sentiment is sound maybe but I still find it odd.

     
  11. Karen

    October 17, 2010 at 12:41 AM

    I won’t be shutting down either. As soon as I heard about it….on Twitter, a few days ago, I had an immediate reaction to it. It took me a couple days to write my post on it (probably to get over the major “HUH?!” reaction I was having!). But, my kidlet will still be autistic on November 1st and so I will still be tweeting & updating my Facebook status!

     

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