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"Communication Shutdown" for Autism - Will You Participate?

By October 31, 2010

Tomorrow, November 1, has been set as "Global Communication Shutdown Day."† We are encouraged to cease twittering and facebooking for the day in order to raise awareness of and funds for autism - and, to some degree, to simulate the communications challenges faced by people on the autism spectrum. The non-communication is supposed to mirror autistic isolation; the fundraising will take place when you pay for a "charity app" you place on your computer which "spreads the word, gives a shutdown badge to wear online and adds your picture to a global mosaic of supporters, next to the celebs."† Information about recipients of you donations can be found on the Global Shutdown Day website.

Not surprisingly, there is significant controversy within the autism community about whether or not a Global Communication Shutdown Day is a good idea.† According to the Communication Shutdown website:

It's a global initiative to raise much-needed funds for autism groups in over 40 countries. By shutting down social networks for one day on November 1, we hope to encourage a greater understanding of people with autism who find social communication a challenge.

Stuart Duncan, an autism dad and blogger who occasionally comments on this site, is taking part in a coordinated "Shout Out" event on Twitter and will (with others) host an online chat on The Coffee Klatch website to counter the day of silence.† Here, in part, are his reasons:

The whole idea of Autism Awareness and Advocacy is that we speak out for those people/children that can not speak for themselves. As such, it makes very little sense to silence ourselves for them.

Also, I'm not even Autistic but even I feel it's pretty insulting to think that not visiting a couple of websites could ever give you any insight into what it's like to have Autism. That's like saying that because you were in chess club, you know what it's like for children in bad neighbourhoods to get mixed up in violent gangs.

Marianne, a member of the Communication Shutdown team, has responded to Duncan's blog post, saying "...yes, it is one day of silence, but we are certainly making sure this silence will be noticed. There will be plenty of communication before and after the day. Also, through the application, a mass message of support will be sent out by all participants on the morning of Nov 1 to make a highly-visible statement all at once."

I personally don't intend to take part in the "Communication Shutdown." I'm not passionately against the idea, but I do have some questions about donating to a suddenly-there non-profit; I'm not at all sure that the event will help to improve understanding of a very complex and diverse group of people; and I truly think we're better served by communicating than by ceasing to communicate (even if it's for a cause). I will, however, dedicate this week's newsletter and tomorrow's blog to the topic of communication and autism.

Will you take part in the Communication Shutdown? What are your reasons pro or con? Share your thoughts and vote in the poll!

Comments
October 31, 2010 at 1:33 pm
(1) Twyla says:

My inital reaction is to be for anything meant to call attention to autism and raise funds for autism. But it seems odd to me to recognize autism by not using Facebook and Twitter for a day because:
- This certainly can’t come anywhere close to simulating communication challenges faced by people with limited to no verbal skills. I mean, really, have FB and Twitter become so essential? In the course of our daily lives we talk to our family and friends and all the other people we interact with in person and on the phone, and whether we use FB and Twitter does not have a huge impact.
- Some people with autism cannot talk but can type, so this does not match up with their experience either.

I went to the web site to see what charities they are giving to, and immediately got security warnings and so I just exited. I’m not about to allow access to my computer from some web site whose group I am not even familiar with.

Sorry if I’m being negative. Maybe someone who knows more about this event than me can offer some additional information.

October 31, 2010 at 1:35 pm
(2) Twyla says:

P.S. “But I will do something else to raise awareness and understanding” — as I always try to do.

October 31, 2010 at 3:05 pm
(3) Sharilyn says:

I think people should do what they feel they need to do. But I will not be participating in this. Having a son with Aspergers, communication is top priority. Never stop talking about this subject. Silence is not golden and makes one feel alone.

October 31, 2010 at 3:27 pm
(4) continually amazed says:

Sometimes less is more. The concept is pretty simple. Grab their attention, and trust me the world will notice this, then shout it from the roof tops.

But anything to fight seems to be the norm in the autism community. Too many egos…..

October 31, 2010 at 5:02 pm
(5) barbaraj says:

I’ll do it, but it makes no sense to me, it just gives those that don’t want to hear the truth a day off from being bothered. However, if someone thinks it will be helpful I’ll play along.

I just started reading about VENS..am finding it very interesting, but will wait until Tuesday to go digging for info on blogs,etc.
Interesting in that these are formed in the post natal period, starting at 35 weeks gestation on to age 4, just the ripe time to perhaps be damaged by vaccines.
Von Economo neurons..interesting..

October 31, 2010 at 5:17 pm
(6) Twyla says:

“continually amazed”, my uncertainty about this event has nothing to do with ego.

October 31, 2010 at 5:37 pm
(7) Springingtiger says:

I cannot see what this will do to help people understand the communication issues people with autism have. If you want to understand our communication issues shut yourself in your room for a day and talk to no one. You could try watching foreign films without subtitles – sometimes conversations are like that. Whatever I won’t join in for me social networks are the only social interaction I really enjoy.

October 31, 2010 at 6:52 pm
(8) Malia says:

I think Springingtiger brings up a really good point. For my son, social networks provide an enjoyable means of communication… so, shutting that down for a day only isolates him further. It makes no sense to me.

Then again, I haven’t logged onto Facebook and Twitter in ages and ages, so to stay away one more day isn’t going to likely be noticed by anyone. I may not post any comments here, but it won’t be the first day I’ve missed doing that either.

I’m not sure if all of this means I’m participating or not participating.

October 31, 2010 at 7:12 pm
(9) continually amazed says:

Twyla, I was referring to those who found it necessary to take opposition and monopolize on it. Not sure why you thought that particular comment was directed at you….

I’m obviously signed up as are numerous others. I have never heard of another person stumbling across a warning. The sight is perfectly safe and secure.

Numerous orgs in 40 countries are participating. It will be recognized widely, which will raise awareness. That is the point.

October 31, 2010 at 8:09 pm
(10) Stuart Duncan says:

I wrote my blog post after agreeing to be a part of the 24 hour “Shout Out” event, I was leaving it alone prior to that despite my not agreeing with various points… but it is an event to raise awareness and it will do that. So I left my opinion out of it both in discussions and my blog.

But after I agreed to be a part of the “shout out” so that I could answer questions, get involved in discussions, learn new things and just generally be involved, I figured I owed an explanation to anyone that regularly reads my blog as to why I wouldn’t be staying quiet.

As I said in my post, I can’t get their software to get the logos and auto status/tweets unless I donate but being a father in my situation, I don’t have a dollar to spare. So I can’t even get the software to raise awareness if I wanted to. I’m left out… because of Autism. How backwards is that? (Yes, I realize I can just do it on my own but it wouldn’t be the same, not having their auto generated updates)

Anyhow, I voiced my objections and hope to see these things fixed/changed for next year. I’m sure each year they do this, it will get better and better.

I hope they continue it, even if I don’t agree with it in how it’s being done right now. I just hope people stop judging me for not taking part in it since I don’t judge them because they are.

October 31, 2010 at 8:16 pm
(11) Lisa Jo says:

As a person who’s worked in the nonprofit/educational community my whole adult life, I have a lot of questions about brand new non-profits that suddenly spring out of nowhere and take your cash. I’m particularly skeptical when -

1 – there is a long list of logos included on their list of charities, but no details about what the organizations represented are getting, what they’re doing with the money, etc.

2 – the videos “explaining” the project are essentially political ads with lots of great music and quick cuts to images, and virtually no information.

3 – the ONLY way to get involved is to pay an organization about which I know nothing.

Sure, it’s possible these folks are absolutely on the up and up, and all their money is going to legit projects that will make a difference for families living with autism. Then again, it’s possible that this is next door to a scam, and that only a small portion of the money will make it to the autism agencies. It’s also quite possible that the money will make it to the autism agencies with no particular concern about how the money will be used.

Since there are plenty of autism groups and orgs that I know well and trust fully, why make myself nuts?

Lisa

October 31, 2010 at 10:16 pm
(12) autism mom says:

Instead of shutting down, I think I’ll stay online and keep an eye out to raise awareness – shutting down, in my opinion, isn’t the way to raise awareness, but rather shun it. I’ll stay online.

October 31, 2010 at 10:48 pm
(13) Bill says:

I am endowed with Asperger’s.

I won’t change anything regarding how I conduct my life or communicate tomorrow.
Personally, I do not facebook or twitter anyway, because I cannot risk outing myself as an Aspie on the internet. (Even if I was careful not to write anything myself identifying myself as an Aspie in the public domain, I do not trust others I know to refrain from linking or friending or whatever in a manner which outs me.) (Similar reason to why I would never go to an Aspie support group or autism parent support group; someone there might out me.)

October 31, 2010 at 11:00 pm
(14) zusia says:

Bill, you can join Aspie Hangout on Delphi Forums, it’s free, and I guarantee there’s no way anyone can out you. I’ve been on there for years and nobody has ever asked anyone to reveal their real name or location. It’s perfectly safe.

I’ve heard from this Marianne, who is part of the group that started this insane “shutdown” and she probably means well but is terribly misguided. Non-autistics are so predictable in their ignorance.

November 1, 2010 at 11:14 am
(15) YellowJuana Cake says:

Doesn’t make much sense to me to STOP communicating in an effort to raise awareness. That’s more like NO effort to raise awareness. Interesting tactic.

November 1, 2010 at 12:21 pm
(16) Autistic Living says:

Lisa,

Actually, the “only way to get involved” is simply not to use Facebook or Twitter, for one lousy day. You don’t HAVE TO donate anything. If you want the little red circle with the line through it over your profile picture, then yes, you need to donate. Otherwise, all you have to do is shut your mouth on Facebook and Twitter for one day.

I know it’s a difficult concept to grasp, but it really is that simple.

That being said, let me now address the other folks commenting on this blog.

YES, it does make sense to stay silent for one day to show support for the non-verbal. It shows the world what it would be like if everyone were non-verbal. It shows you what it would be like, if you yourself were unable to communicate.

You can run your mouth until your face turns blue and your teeth fall out. That will not change the fact that there are people in this world who simply cannot communicate. To think for a second that you or anyone else can communicate FOR them, or even on their behalf, is arrogant. We know not what they think, and we know not what they want to share.

We can only guess. That is the point of Communication Shutdown day.

As for the money? Well, I can be sure that they will not raise 70 million dollars and squander it on things like fruit fly research, as is the case with Autism Speaks. That’s enough for me.

November 1, 2010 at 2:31 pm
(17) vmgillen says:

Lisa Jo: I agree, there’s certainly a lot of new groups springing up: ASD, as Dx du jour, continues chanelling money even in a tight economy. My son can’t get a new wheelchair, but by golly there are baseball teams withuniforms and everything for HFAs- sorry, shouldn’t get into comparatives, but that’s what economic hardship’s about, you know?

I am continually amazed about the “non-communication”
statement – it’s not not not non-communication: when my son throws a punch he’s communicating VERY clearly – and inappropriately. To style this as non-communication is a problem, because all too often time is wasted on non-bevavioural speech therapists because “communication” is id’d as a problem, when the problem is actually behavioural.

BTW I do not tweet, chirp, face… however, I do, indeed, communicate!

November 1, 2010 at 3:43 pm
(18) Camisgirl4 says:

My son would prefer I keep telling people about Autism rather than be silent about it even for a day. I understand the rational behind the idea but think it really does not get the point across. So I will use Facebook and Twitter to tell people about Autism and raise awareness rather than take away from it.

November 2, 2010 at 2:01 am
(19) Caitlin says:

I respect the intent, but find the concept too shallow to be meaningful in terms of effecting long term changes to awareness for autistic individuals. I worry that it promotes myths and stereotypes about autism, that it capitalizes on ‘gimmicky’ tacktics, that it belittles genuine autistic communcation challenges by comparing them to the “challenge” of being off social media for 24 hours, that it really moves us no further ahead in terms of global respect for autism as a neurological difference.

My contribution to the shout out is here: http://www.welcome-to-normal.com/2010/11/advocating-101-how-to-write-letter.html

November 3, 2010 at 4:06 am
(20) Xyzzy says:

I participated in the Shout-Out, being autistic… Even when I was unable to speak as a little kid, according to my parents (both likely autistic), I communicated clearly with my eyes and actions; as an adult, while my non-autistic ex couldn’t ‘read’ my non-verbal communication, my autistic ex definitely could.

The shutdown reinforces the myth that just because non-auties don’t natively understand us, we must not be communicating. It’s like declaring that because I only know English, immigrants must all be yammering nonsense words. Imagine how silly someone would look to you if they did that!

Both auties & non-auties only natively communicate with our own kind, have to learn the other, and don’t pick it up much easier as babies. Most autistic folk learn what we can for survival, some non-autie parents like Estee Klar do, too. That’s a lot better than deciding that the only “real” language is one’s own, and promoting that idea as “awareness” of the people that only speak the other kinds…

November 3, 2010 at 6:46 am
(21) autism says:

You say “Both auties & non-auties only natively communicate with our own kind, have to learn the other, and donít pick it up much easier as babies.” Makes it sound like being autistic is a bit like being Italian…

My personal experience is that people with autism don’t necessarily communicate well with other people with autism at all. At least, in the classroom that doesn’t seem to be the case. There are huge differences, and often (in my experience, again) folks with autism when placed in a classroom together can find it very tough.

Lisa

November 3, 2010 at 8:11 am
(22) autism says:

Xyzzy – please take a look at today’s blog post! I’ve been thinking about your ideas, and wanted to put them out there so others could provide a perspective.

Thanks so much for your comment,

Lisa

November 5, 2010 at 8:42 am
(23) bobbi says:

Sorry, but I think this is silly and embarrassing.

You would not pretend to have Down’s to raise awareness
You would not act like you had cancer to raise awareness

Why mimic the symptoms of a condition to raise awareness? That’s just cruel if it were any other condition.

Also – Without social networking, how will the word be spread?

Sorry, I support the cause and always will but this seems a bit iffy to me and leaves a bad taste in my mouth.

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