When raising Autism Awareness gets out of hand and becomes something else

I’ve been noticing a disturbing trend lately…. Autism Awareness.. run amok!

Autism awareness is a great thing, it’s a wonderful thing…. it’s a necessary thing.
But as we all know, too much of a good thing can be bad for you.

Here are just a few instances where well intentioned Autism Awareness becomes more of a nuisance than a good thing.

towerThe Share-o-holic

This happens all over the internet but the two most obvious places I see it played out is on Twitter and Facebook. This is what it looks like:

  • Twitter: Instead of tweeting a link or message, they mention every single person they can find on Twitter and tweet their link or message, over and over, to each person, until they get blocked by Twitter for spam. Often, these all come with a request to retweet it.
  • Facebook links: So excited about a blog post or someone writing about them, they race to every profile, fan page and group that they can find on Facebook to share that link. Thousands of shares later, they do it again the next day.
  • Facebook bios: Having written a cleverly worded bio about who they are, what they do or what they offer, they hit every profile, fan page and group that they can post to and repeat it again, word for word, weekly or more.

This constant repetition is frustrating enough but seeing it daily or weekly is enough to make me want to unlike those fan pages, remove myself from those groups and so forth… all because of one person. And I’m all for Autism Awareness! Imagine what others must think.

The News Source Replicator

Being aware of what is in the news is paramount to being aware of what’s happening in the Autism community but also in being aware of what may benefit you or your children. Some new information may shed some light on things close to home, some new therapy may be just what you need.

That’s great!

However, what we don’t need is for people to automate their Twitter account to just pull from a news source on Autism.

If their entire Facebook feed is news stories and never an actual conversation piece or anything, no one is reading.

If they login to Google+ once a day just to hit the share button on every single Spark available that day and then they’re gone after… people will remove them from their circles.

Listen to me carefully, if all you have is news… no one is reading. You’ve blown it. Autism Awareness is your goal but not your achievement.

Alienating Your Own Kind

Oh this one scares me… I just shake my head…. violently. I am just so dumbfounded.

Recently (late July to be exact), Temple Grandin created an actual Facebook profile. Not just a fan page, but a profile. So she could have friends and everything.

It was quite impressive to see how quickly she got to 5000 (the max). It’s a true testament to her and her work.

However….

For the last 2 weeks, I’ve watched update after updating of Temple Grandin joining an Autism group on Facebook. Now, groups don’t work the way you might expect. Temple Grandin isn’t actually joining these groups. The groups are adding her.

The way groups work on Facebook is the group can just add anyone it wants and it’s up to those people to opt out.

Now, think about how frustrating this must be when it happens 10 or 20 times a day.

Granted, it’s mostly someone representing her and also, she’s a very kind woman and probably doesn’t really mind being in all those groups however at the same time, it’s really quite rude of so many people to do this to her. Her Facebook stream must be simply filled with group posts. Insanely filled.

Is this really how we treat someone we respect so much? We force hundreds of Facebook groups on her until she finally decides she’s had enough and leaves Facebook behind?

What exactly is it we’re doing?

Are we really raising awareness when we do this? Are we really “sharing our message” with others?

Or are we trying to ram our own need for attention down the throats of others?

Because sometimes, I have to wonder.

And if you know me, you know that I’m all for raising awareness. For doing more than that! But this is not the way to do that.

Making people want to block you, unfollow you, leave the places they used to enjoy… all just to get away from you.. what is it you’re really doing?

Broadcasting

In the social media world, this is called broadcasting. This means that all you do is send message after message, link after link, story after story and you either don’t, or very seldom actually interact with anyone. You take nothing in.

If you treat social networks as your own personal radio station, you’re doing it wrong.

First of all, no one listens to a radio station that only has one song.
Secondly, people  looking for social interactions don’t turn on a radio for it.

I’ve often said that Autism Awareness is a passion for some people but the problem is that passion can be blinding sometimes. In an effort to share the message with the world, you become obnoxious and the world becomes annoyed and tunes you out.

When that happens, you don’t just hurt yourself, you hurt all of us for all of our messages become a little less powerful, a little less heard.

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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6 Responses to When raising Autism Awareness gets out of hand and becomes something else

  1. mel August 25, 2011 at 11:18 pm #

    I’m sorry. I am a researcher and scientist by education and training. My son has aspergers. I read an incredible amount of material (studies,articles,stats) each day that centers on Autism, and especially young adults / adults transitioning. I have been searching for help in his age bracket for 4 yrs now, with very little success. I found it very difficult to find resources or services for this “late diagnosis” generation.
    Therefore, when I find new information I tweet about it in an effort to make it more readily available and easier for those coming along behind us. I didn’t
    realize this was an improper use of Twitter.

  2. Stuart Duncan August 25, 2011 at 11:26 pm #

    mel,

    There’s nothing wrong with sharing news or information. I do that myself quite often.

    It becomes a problem (to me anyway) when you automate your Twitter account to do nothing but that.

    To me, all that says is that you’re not actually reading the news yourself or that you even care about it… you just want a Twitter feed that’ll do the work for you and hopefully get attention.

    Don’t feel bad about sharing useful information, whether news stories or studies or what have you.. if you’ve read it and find it worth sharing, please do.

    I’m always happy to read from people that take the time to do it right.

  3. outoutout August 26, 2011 at 12:51 am #

    Hmm. I guess I was always under the impression that unless you’re spamming or exploiting people in some way, there really isn’t a “wrong way” to use Twitter or Facebook. To some people, it’s a method of spruiking their blog or special projects (cough-cough), to others it’s a chat room, an e-mail service, a personal radio station, etc….

    Now, that said, there are definitely a lot of etiquette violations. Adding someone to an FB group without their consent is a huge no-no; to be honest, I had no idea FB worked that way. And it’s also bad form to beg for followers/friends or retweets. I think, in those cases, awareness and education on netiquette would go a long way.

    But I think that one of the great things about social networking is that not everyone has the same desires or goals. Some people don’t care as much about being advocates or spreading awareness as they do about getting their own stories out…and that’s OK. I don’t think it hurts the broader cause. Most people are smart enough to separate the wheat from the chaff. If you find it annoying, then don’t follow/friend/circle it.

  4. Tertia August 26, 2011 at 3:14 am #

    I do like the points that you make. If one is going to appoint yourself as an “autism-advocate” one needs to keep in mind that your behaviour, your thoughts and your words influences how people view EVERY autistic person or autism in general. Not your intentions. It is hard to have a balance in life (well for me it is) this post reminded me how important that is – thx.

  5. sidther August 26, 2011 at 9:22 am #

    I do agree with you about the awareness running amok. I do have to point out that more and more people who are actively trying to raise awareness are on the spectrum themselves, therefore they may have difficulty understanding the perception of readers and followers.

    I am new to writing online and being very systematic, have followed the advice given to me by the other writers to create backlinks and to get the traffic flow started to the letter, I think I fall into the broadcasting category (as I am not really comfortable with twitter or facebook yet and can’t do the things mentioned above unless I have done them accidentally).

    I hope that someone out there has some spare time, and maybe they could create an article about how to raise awareness without violating the social etiquettes- like an instruction manual for the do’s and don’ts so that everyone may be able to participate without harming the ultimate goal.

    I will try to interact more with my followers, but I am scared of people!

    This was very helpful! Thank you

  6. mylindaelliott August 26, 2011 at 8:00 pm #

    I totally agree Stuart. At some point I just stop reading posts from people that I realize are sending the same stuff over and over in every spot they can find. Which is a shame because if they did say something engaging I would miss it.

    An aside is that your posts and blog always make me think. Not just think but work at defining what I do. Thank you.

    Wonderful post too.

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