Communication Shutdown, Why I’ll be online Nov 1st.

Ok so, I’ve argued with myself about whether or not I’d ever even discuss this topic, much less write about it but today I’ve volunteered my time to be a part of a 24 hour “shout out” on November 1st. It’s for this reason that I think it’s only fair that I explain why. Also, doing so just days before the actual day will help with anyone wondering if I am discussing this just for search engine traffic or so forth.

The Premise

no communication

No Communcating Nov 1st

The idea behind this ‘event’ is that people should not use Facebook or Twitter for the entire day of November 1st in an attempt to experience what it is like to lack the communication ability of those with Autism.

You visit https://communicationshutdown.org/ and donate some money, they send you a program that you install and it will update your Facebook and Twitter accounts to announce that you are not going to be there that day in the name of Autism.

You spread awareness, you experience the lack of communication, someone gets the donation, the world is happy.

Speaking for those that can not speak for themselves

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 neighbouurhoods to get mixed up in violent gangs.

Not saying anything is the new “what’s your bra colour”

Remember last year when Facebook women started putting their bra colour into their status as a fun little “shhh… don’t tell the boys” game? And after most said it was childish and stupid, they attached the Breast Cancer Awareness mantra to it and suddenly it became a worthy cause to participate in.

The problem was that most of the guys and even a very large number of girls simply never got the message. The problem with “shhh” is that noone knows why you’re “shhhh”ing unless they ask and really, who cares enough to ask? No one.

So this communication shut down will very likely become the next viral campaign that totally went by most people’s attention spans without a second glance until some other day when they caught a news article or someone says something off handed and they go “oh! That’s what that was about?”

Flawed target audience

If this is truly aimed at giving people a taste of what it is like to have Autism, why would I need this? My son has Autism. Many of the people being asked to participate have Autism themselves. Do we really need this exercise to experience it?

It seems to me that this needs to be focused on the general public more than those of us that are already advocates or that already have Autism. It’s a great starting point as we can reach out to more people than they could alone but obviously the approach was flawed. We should have been given tools (banners, ads, market material, links) to prompt readers rather than asking us to just donate like any other person.

Donation Information

So the site lists a rather impressive list of charities/organizations which will be receiving these donations… it even promises that your donation will go to a place that is in your country. This is impressive. View partners.

What is not impressive is that we have no idea who the people are putting this on, nor how accountable they will be. Will we see records and breakdowns of where the money went? Will we get autobiographies of those involved? Do we know what will be funded with the money?

Furthermore, why can’t we just donate to the charity/organization directly and keep on Tweeting and Facebooking? Facebooking? Is that right?

Also, why can’t we just have the program to update our accounts and post about our attempts at Autism Awareness without having to donate? What if I want to participate because it’s a worthy cause and want to get the experience but can’t afford money to donate because we are living with Autism ourselves and could probably use that donation money for our own family?

The Alternative

Some blogs are pushing for an explosion of shout outs, a total opposite to a communication shutdown. They’ve even come up with some tags #AutismShoutOut to use on Twitter to show your support.

To me this makes a lot more sense but shouldn’t this be done in April? Autism Awareness month? Why is this being done in November anyway?

I don’t think I can endorse this approach either really, since it will likely get quite annoying and/or repetitive after the first few hours. But it sure does beat not saying anything. Cause no one will know why and you can’t tell them!

What I am doing

As I said in the first paragraph, I have decided to participate in “Communicate and Educate Speak out and Speak Loudly” 24 hour chat held by http://thecoffeeklatch.com/ on twitter: @TheCoffeeKlatch

I will be co-moderating from the 4pm to 5pm EST hour, they’ve organized that there will be moderators for an entire 24 hour period from 9am to 9am. This means that information, questions, advice, myths, stories and more will be shared for the entire duration.

If this isn’t the opposite to not communicating for 24 hours, I don’t know what is.

And so, I’ve decided that since I agreed to become a part of it, I should explain why I made the decision. Not that I owe it to anyone, but that I feel this decision could raise the question.

My suggestion for you?

I have three.

There’s really nothing wrong with taking part in the communication shut down. It will raise awareness, they will get donations to good charities. If you wish to do it, good on you. You’re doing something great for the Autism Community.

There’s nothing wrong with not taking part in it either. There’s nothing wrong with seeing flaws in the plan and doing the exact opposite. Speak out, speak loud and speak proud. Raise awareness as you see fit. If you do wish to take part in the chat, in which I will be a part of, simply add #tck to your tweets or use their custom chat room which will help you streamline the conversation much easier: http://tweetchat.com/room/tck

Finally, there’s nothing wrong with just going about your day as you always have. Talk Autism, talk sports, family.. anything and everything. You are involved already, you’re already doing your part. Feel proud in that. You should.

About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

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14 Responses to Communication Shutdown, Why I’ll be online Nov 1st.

  1. outoutout October 28, 2010 at 6:46 am #

    I completely agree with your position on this, Stuart.
    (and I’ll likely be hosting an hour of #TCK on the day, too, so see ya there!)

  2. Marianne October 28, 2010 at 12:12 pm #

    Hi Stuart

    My name is Marianne and I’m part of the Communication Shutdown team.

    First of all, thank you for posting a thoughtful and well-balanced article.

    I hope you don’t mind, but I thought I could jump in and answer a few of your questions.

    So 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.

    We also see the badge as a sign of solidarity and it will be displayed on all profiles encouraging others to also take part.

    And we do realise that nothing can truly simulate what it is like for people with autism. We are simply trying to encourage a greater understanding from people outside the autism community. You’re right, people within the community are already very much aware!

    We are targeting social network users and have provided a range of tools to spread the word as part of the application package. People have become more and more reliant and even addicted to platforms like Facebook and Twitter. We believe if they shutdown for 1 day, they will feel a sense of disconnection and they will feel a sense of frustration. By creating a little empathy (not sympathy), we hope to encourage a wider understanding and acceptance of people with autism.

    We are also planning to share the experiences that come to light from the shoutout with our supporters to further educate them about autism.

    Thank you for reading and I look forward to hearing you on the Coffee Klatch.

  3. Marianne October 30, 2010 at 12:28 pm #

    P.S. We would really like to give your voice more reach, while at the same time giving our supporters a deeper understanding of autism.

    If you would like to share any of your positive experiences or challenges with our supporters please feel free to email me at marianne.harvey@communicationshutdown.org

    Many thanks and hope you have a great day.

  4. Catherine October 31, 2010 at 3:47 am #

    As an aide and personal support worker who has worked with kids with autism for more than 4 years, it is sad to see a father of a child with autism negatively promote a fundraiser for autism. It may be flawed but help fix it instead of go against it. You are only hurting your kid, though i guess you must be really rich and in an awesome school district so you really wouldn’t know who could benefit.

    • Stuart Duncan October 31, 2010 at 7:21 am #

      Negatively promote or not, I am promoting it, complete with links to the program and the organizations that the donations go to. Most blogs do not even do that much. In my post are several suggestions about how this can be fixed or changed for next year. I would love to see it be fixed and as it is only it’s first year, I’m sure there is still a long way to go before it is perfect.

      Don’t go assuming that because I don’t jump on board with every single ‘event’ to raise money that I don’t care or that I’m rich. Most of them are amazing ideas and very deserving but sometimes there just might be one that comes along that I don’t agree with. And being told to shut up for a day is one of them.

      Suggestion #1 in my post summary is to help out and support the Communication Shutdown. I’m sorry if you didn’t get that far into my article before making your judgments. If you would like to partially read from some others with Autism and/or children with Autism that will also not be taking part in this, you can find a list of other blogs to pass judgment on here: http://lizditz.typepad.com/i_speak_of_dreams/2010/10/why-i-wont-be-shutting-down-on-november-1.html

  5. Dr. S October 31, 2010 at 12:13 pm #

    Thanks for posting this. I am participating in the shutdown, not because I think it’s a perfect message about autism, but because of its potential to raise awareness globally. My son has autism, and we live with his communications problems everyday. Frankly, many people have no idea that communication problems are a part of autism. I am a doctor, albeit not a pediatrician, and even I did not fully understand the communication and social interaction issues until I had my son. One of the most frustrating issues I see with the autism advocacy movement is its fragmented nature. What is it about autism that makes it so difficult for us all to get on the same team? I think we all want the same things. So why are we fighting over whether it’s better to participate in a fundraiser or not? In the end, increasing discussion about autism is critically important, and I guess that seems to be happening. Whether you like it or not, that was prompted by Communication Shutdown. Best of luck with your advocacy efforts tomorrow.

  6. Marianne Russo October 31, 2010 at 7:24 pm #

    As with everything else in the Autism community there is division as to what is best, perhaps the reason is in the diversity of the disorder itself. I am the founder of The Coffee Klatch and respect the opinions of all. There is validity to any attempt to raise awareness for Autism and I respect and welcome all and wish the “Shut Down” campaign much success. It is our position, based on the wishes of the many adults on the spectrum, advocates and parents who have reached out to us ,as well as our own personal opinions that shutting down communication is not the answer. I actually feel that the “Shut Down” effort is in large population doing quite the opposite, encouraging those with a voice in Autism to speak even louder. My goal is to encourage those who truly want to understand the challenges and struggles as well as the incredible brilliance and gifts of Autism to be educated by the the best advocates, experts, authors, therapy providers, parents and most importantly those on the spectrum, to come together in one place for an entire day to “Communicate” I am very proud of the overwhelming response to our invitations to those to be Guest Moderators. The line up is impressive. We have chosen to do the event totally on Twitter verses our Blog Talk Radio to ensure that everyone has a chance to interact. With education will come compassion and acceptance – It’s time. In the end we all have the same goal – to raise awareness. And on November 1st 2010 whether you shut down or shout out – we will all be working towards that goal. ~ Marianne

  7. Robin Nemeth November 1, 2010 at 7:34 am #

    Well some people on the spectrum speak too much, I’m told, so there. Usually about one topic.

    I’ve been censored, ridiculed, and threatened with arrest over the last six years simply for saying the word ‘thimerosal’. There are too many people profiting from the genocide that is the administration of 25 microgram per dose flu vaccines.

    Even Ms. Stagliano, of Age of Autism, has been known to censor comments that threaten her own agenda. Why a ‘communication shutdown day’, Kim, if you’re one of those with so much power you can shut down anyone who’s a threat to you with what they might say? Well, I hope you’ve been enjoying working with Autism Speaks. I for one do not intend to shut up, today or in the future, until the truth about what they and you are up to is known.

    The epidemic is not going to stop until the lies do.

  8. Cathy November 1, 2010 at 1:42 pm #

    Thank you Stuart Duncan for generating such thoughtful discussion.

    As for me personally, I am not participating in the shutdown. This is mainly because I strongly suspect that if my son could communicate all he wants to, he would say:

    “Mom, I get so frustrated not being able to find my words! I am thankful when people use whatever communication abilities they have to bridge that gap. Use your gut instinct, use words and pictures, do what you feel. I am right here listening. I know you respect my lack of communication and I also respect your verbal ability. Today I need you to be who you are- a person who can speak out for me.”

    All awareness-raising is good, in my humble opinion. “Energy flows where attention goes.”

  9. Hartley Steiner November 1, 2010 at 2:39 pm #

    Looking forward to co-moderating with you during the SPEAK LOUDLY event on @TheCoffeeKlatch today!

    Thanks,
    Hartley Steiner
    Award winning author of
    This is Gabriel Making Sense of School
    http://www.hartleysboys.com
    @ ParentingSPD

  10. breakdown June 22, 2011 at 9:13 pm #

    Some world. Well I’m partly schizo (& Asperger’s), but I prefer to live a normal life and get on with my life. Yes I’ll go to Autism SA, so what? I’ll act like a genius there and treat autistic people like normal people, they’re just people, with equal rights. My friend Bill (at the dry-cleaners) treats me like a normal person, “Hey, mate, how’s it going?”, as if autistic people are sad and lonely, I do ascetic practices to solve the problem, and I’m perfectly happy, I still go to the shops and buy food, books and cigarettes like any normal person. It’s a private issue. Does a schizo go around protesting? No! Every autistic person is different, they have voices and wear glasses or whatever they do (I don’t know), he or she might be normal. All I want out of autism is believing what they want to believe, any religion they want, and living normal. Just be autistic, get a life and move on with your lives!

  11. breakdown June 22, 2011 at 9:36 pm #

    Is everyone ignorant of this? Nobody cares anymore. So you’re autistic, so what? I see films of it, do you have to show off this problem? He or she could have trouble opening the door, or want to learn etiquette, he might be a genius with wife problems, anything, but does a person worry that someone’s door is stuck? Some autistic people can solve the problem. Does my friend Sean Borda act like an idiot? Of course not! Does my schizo friend show off that he has schizophrenia? It’s just a fucking problem, it can be dealt with like any problem. Religion is a problem, but no one feels sorry for a religious person, thieves are idiots, but I don’t care how smart they are. Autistic people all have different problems, and they’re not a fucking tribe, they’re just a group of people who are nothing alike. No autistic person’s friend will tell an autistic person they’re anything like anyone, no one is similar. Besides, a very few autistic people are ascetics, so what? He or she probably (any person for that matter) cares for his/her soul, it’s no big deal. Do you have to last for one year about it and lose your happiness? I’m strong, I’ll keep my happiness and my soul and asceticism till the day I die, does everything have to be a problem? Asceticism isn’t anyone’s problem, so for the voice of you autistics: “Be brave, learn ethics, be optimists, whatever, just be an ascetic and stick by it, don’t let anyone take your invention away from you; show some damn strength and just reject pleasure and get it over and done with!”.

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