Make the most of the online Autism community, Part 1 – Twitter

The Autism community is global, there’s no race or group of people that Autism does not affect. The problem of the past was in bringing these people together to compare notes and support each other but these days we have a lot of ways to find each other. In the next few articles, I’d like to bring up a few of them but each one has it’s own distinct group of people and features to use. To begin with, I’d like to discuss the micro-blogging site Twitter.

TwitterIf you’re already familiar with Twitter, skip this paragraph, if not, then here’s the basic concept. Twitter is a ‘micro-blogging’ site in that all you get is a small box that accommodates 140 characters (numbers, letters, symbols) to share information with others that ‘follow’ you. You can follow anyone and anyone can follow you but you also have the choice of blocking people or making your entries (called Tweets) protected, so that only people you hand select can read them. That’s Twitter in a nutshell.

Twitter is a great place to help encourage each other and share small pieces of advice/wisdom with other like minded people, in this case, Autism. But first you have to accomplish two goals:

  1. Find people to follow, preferably people that you’re actually interested in.
  2. Get people to follow you, again, people that actually share your interests.

When you first join, this can seem like a very daunting task and for most, the numbers do not rise very quickly. I am going to share a few tips I’ve learned in getting your foot into the online Autism community.

1. Your bio – Settings

Far too often I find people following me that have a genuine interest in Autism, maybe even are Autistic themselves or having a family member who is Autistic but they do not put it in their bio. That’s great if they feel it’s not that important or not who they are but you know what? I feel no great need to follow them back as they do not fit my interest, which is raising Autism awareness.

If you’re reading this, I am assuming that being an Autism advocate and raising awareness is on your mind so add a little something to your bio. Doesn’t have to be a lot, you can write 3 lines on things you enjoy and tack on “Autism Advocate” to the very end and that will be enough to ensure that anyone involved in Autism will hit that follow button and include you into the community.

It’s a simple thing but often overlooked.

2. There’s more to you than your cause

It’s great that you feel passionately about something but you have to realize, we all do. It is the ‘Autism Community’ after all, and we all have our various issues we feel strongly about. That being said, we would love to hear about you and yours and support you as best we can however we also want to get to know you, and that means you’re going to have to tell us a little more than just what your cause is.

You don’t have to get personal, just share jokes, links to sites you find interesting, tell us something funny that just happened in your house. It’s a little unnerving at first sharing things with people you don’t know but if you want people to relate to you and feel for you… you’re going to have to let us in and not overwhelm us with your passion, or else it will just sound like a chant to us.

3. Conversations – Simple, but sometimes we forget

Twitter is a micro-blogging site and in that, sometimes we feel we should just be making a statement and leaving… but it is also a bunch of human beings on the other end of those tweets that you’re trying to reach. And those people are sharing things with you, what they’re eating, what they’re reading, the funny thing their kids just did… if you want those people to be interested in you, you’re going to have to be interested in them.

Most of the time when we read something funny, we chuckle to ourselves and then move away. In this case, don’t move away, actually hit that reply button and put “That’s funny, thanks for sharing” and before you know it, you’ll have a new follower, maybe even a new friend.

And the next time you share something funny, you’ll be getting responses as well… and that person that responded has their own followers and they’ll want to see what was so funny and then.. their followers will find you!

4. Retweet!

If you find that someone links to some brand new research just released, or some great advice or even just something generally interesting to most people, retweet it. It only takes 2 clicks… and you just know that you really want those people to retweet your stuff. So in this case, you’re going to have to give a little to get a little.

On top of that, you’ll be sharing stuff that others will find interesting and want to retweet themselves. Before long, they’ll think of you as an information source even though you didn’t go get that information yourself. Retweeting is a great way to show that you do your homework, that you care, that you share and that you’re someone valuable to follow.

That being said, there’s nothing wrong with retweeting something that you know very few will like besides you, because it shows who you are, but you have to realize that this won’t be something to entice new followers your way. Sometimes keeping things in your bookmarks is a better way to go.

5. Search + hashtags

Hashtags are keywords with a # in front of them. Basically, it’s just a way of flagging a word such that it becomes very easy to find in the search. For example, searching for #Autism in the search box will return a huge list of people that are sharing great information and advice right now! Find the ones that look to be sharing the best stuff and follow them. Chances are they’ll follow you back. If not, no big loss, they’re providing you with great information to retweet or use in your life.

Conversely, if you tweet about something important, such as Autism, put a # in front of it to ensure that others are finding it. It takes a little practice to know when to use it, what words to use them on… but if you have a few conversations and browse enough, you’ll get the hang of it pretty quick. Think ‘topics’ when you think of what to hashtag. Some examples: #Autsim, #ASD, #ADHD, #parenting

6. FollowFriday

Now that I’ve mentioned hashtags, one hashtag is extremely popular on Fridays called #FollowFriday. This tag is not really used for searching but for 2 other reasons. One is to give a shout out to people they follow that they enjoy reading and two is to recommend those people to the rest of their followers.

For example, if I find your tweets to be very informative and/or entertaining, I may put your name into a tweet with a #FollowFriday hashtag which tells others that you have something valuable to offer and that they should consider following you as well.

If you follow steps 1 – 5 (and throw in your own personal brand of personality), then people will be compelled to recommend you the next Friday that rolls around and gain you more followers.

But keep in mind, this also goes both ways. If you never recommend anyone, chances are you won’t be getting many mentions yourself. Most people won’t take it personally but they still won’t be as keen no recommending people to their followers that don’t share the kindness.

8. Remember, we’re all human.

Seems a little silly but often we forget that the weird names with weird tweets are real human beings out there, with real lives, with real issues of their own. Those people sharing their lives and issues are what draws you into reading about them and you sharing yours will be what draws them into yours.

Try not to offend, we all share something in common in the Autism community but we all also have our own view points on various things. Agree to disagree, try to keep an open mind and read what they have to say as something they believe. Right or wrong, your opinion or not, real people have their reasons for thinking how they do. And if you want them to respect you, you have to keep that in mind.

Conclusion

Twitter is a great way to become part of the community, get and share information, advice, knowledge, experiences and so much more. It can be slow going at first but keep in mind that when you get higher in numbers, the speed also picks up. If you treat people well and share (to and from), then before you know it, you’ll be struggling to keep up with it all and loving every minute of it.

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Parents – Explanations vs Apologies

All to often, we’ve been in the situation where our child is in public and totally at random we find ourselves in the middle of a meltdown, an non responsive zombie or just a very bizarre act that people just see as weird.

Our first response is to look around, see who’s looking at us… are they saying anything to the person next to them? Are they obviously thinking something we’ve heard before?

First thing we can think to say is… now say it with me “I’m sorry, my child has Autism”.

Are you really sorry? I’m not. I have nothing to be sorry for. In fact, my child has done nothing wrong. All children do these things, mine just happens to do it more often than most but you know what? They don’t know that. They’re witnessing it for the first time. And they’re making judgments. No, my child has done nothing wrong. They have. Shame on them for passing judgments without all the information.

That being said, there’s nothing wrong with explaining yourself… “my child has Autism, he’s just really overloaded by all the sights and sounds in here. He doesn’t mean to bother you.”

See the difference there?

I can assure you, with almost 100% certainty, that the person you’re talking to will get far more from that than an empty apology. They don’t know what Autism really is, they don’t know you or your child. But your tone does come across, whether you know it or not. You’ve apologized a million times and you’ve never really meant it, not really. You’ve done nothing wrong, neither did your child. And that person will walk away, still judging you and and still judging your child and you’ll finish what you’re doing and go home feeling angry, defeated… depressed.

Do not apologize for what you do not have to apologize for. Instead, explain what is happening and why. It doesn’t take long. And in so doing, you’re raising awareness, you’re not faking a smile behind anger and tears.

We’ve all been there, we’ll all be there again. There’s no need to feel bad, there’s no need to feel mad. Either they get an explanation or they don’t deserve one but never ever do they deserve an apology when you’ve done nothing wrong.

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Raise Money for Charity and Get a Great Gift – Bill Goldberg!

AUCTION IS OVER

Congrats to Bill Goldberg (@therealgoldberg) and to all who participated in raising US $3,901.99 for charity, the money will go towards raising a school for orphaned children in Haiti. Also, a hearty congrats to all of the celebs who took part in this auction for such a good cause, many of whom also put some extras into the prize list to entice as much generosity as possible.

These tweets are from Bill Goldberg:

In this economy,asking someone to give $4 to charity comes with a sense of guilt..but to get $3,900 for my #TwitChange auction.. #SPEECHLESS

**********THANK YOU ALL*********

Please read all of this, even if you don’t know who Bill Goldberg is. It’s for charity and it’s important. Thank you.

If you are in the slighest bit involved in Twitter, you’ve probably heard about the TwitChange charity going on right now. If not, it is a twitter based charity from a LOT of celebrities, where you bid on eBay to have your favourite celebrity follow you on Twitter, mention you, retweet you, etc.

Some celebrities are matching the winning bids to double the money sent to those in Haiti, some are offering a few extras… and then, there’s Bill Goldberg.

The reason for this post is that even though I am aware that you may not know who he is (most of my readers are hard working moms), I am most certain that someone in your family does…. husband, father, son…. women who love good action??

Bill Goldberg was the first and only man to go undefeated for 173 matches in WCW wrestling, even beating Hulk Hogan during his run. He went on to star in television shows and movies, like Universal Soldier: The Return and The Longest Yard.

The reason I’m writing this today, instead of my usual advice or experiences on Autism is that I believe that this is a great charity, goes to a great cause and I’m inspired by all that Bill Goldberg is willing to do above and beyond what is asked of him to raise money.

In addition to following the winner, or other twitter stuff… he’s willing to phone the winner for a personal call, do a webcam chat, give the winner his name plaque from Pros vs Joes, some memorabilia from his movie The Longest Yard and even have the winner visit him in San Diego. In fact, he’ll pick up the winner at the airport personally in the muscle car of your choice (well, from what he has in his garage).

On top of this, he’ll continue to add on to the pile of winnings for each day that the charity runs, which still has 5 days remaining as of the time of this writing.

Even if you do not know who he is, even if the things he’s done does not interest you, someone in your family likely does. Ask around, find out, get this as a gift if you can. If you can’t afford these bids, ask those people anyway because maybe they can, or can find a way and would like to win this great package.

Bill Goldberg is doing a wonderful thing far beyond what is asked of him and I’m saddened to see that the support just isn’t there. The bids aren’t that high. However, that is good news for you as you could get all these winnings for someone in your family at a relatively low bid.

I have vowed to support him as best I can because I, like many who read my blog, do not have much to offer but we still support each other, especially when what we support is a wonderful cause. And this is one.

Other celebrities are getting tons of bids simply based on who they are. That’s great, they do not require my support nor warrant it quite as much because they are simply coasting on their fame and not offering any more than what is asked of them. I still wish them the best, of course.

But if I can help Bill Goldberg get even one more bid than what he had previously, then I have to try. It’s worth it.

You can bid for Bill Goldberg here: http://cgi.ebay.com/TWITCHANGE-Bill-Goldberg-Twitter-Pkg-therealgoldberg-/300468032373?pt=Tickets_Experiences&hash=item45f54a5375

Updated Listing, You get:

Bill Goldberg (@therealgoldberg):

  • follow you on twitter
  • retweet you
  • mention you
  • he’ll phone you
  • do a uStream webcam chat with you
  • you get his autobiography – signed
  • his name plaque from Pro’s vs Joe’s
  • swag from his movie The Longest Yard
  • he’ll pick you up in San Diego personally in the muscle car of your choice
  • dinner
  • VIP concert at @BellyUpMusic
  • Alice Cooper signed guitar
  • @TheFatBoys CD set
  • @TheFatBoys will follow you on twitter as well
  • $100 gift card from AutoZone
  • gift card for Dominos
  • @HeadBlade shaving kit
  • more!

And he’s not done adding more!

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Staying positive in the face of Autism

Autism is usually synonymous with depression… whether it be the person with Autism feeling depression due to their inability to be a ‘normal’ part of society and have friends or if it’s a parent (family member) that has to deal with the financial burden, lack of sleep, stresses of parenting and so on and so forth, not to mention feeling terrible should their child also be depressed.

Not to throw more fuel onto the fire, you also have those who feel violated due to losing their child at some point due to regressive Autism, where their child was developing perfectly well and then, for what ever reason, their child regressed back to a non-speaking, diaper wearing toddler the size of a 3 year old.

The question is, how do you stay positive with all of this going against you? How do you keep a cheerful disposition and go on laughing with friends and encouraging others to be happy as well?

Sadly, I have no miracle cure answer for you. If I did, I’d be rich and this blog would be full of ads selling it to you.

No, there is no miracle answer that will just make you happy because even if there was, all those things would still exist and you’d just fall back into being miserable the moment you stopped using it.

Instead, what I can offer to you is a change of perspective. A way of looking at the positive instead of the negative.

Your child was not ripped away, your child is still there. And your child is still beautiful and amazing and fighting just as hard as you, maybe even harder.. it’s just not evident. Your child is an inspiration whether they can draw Rome from memory, play piano without lessons, recite Pi to 20,000+ places or if they’re just starting to say their first words at 10 years of age.

Dealing with the world is hard enough, doing it with Autism is near impossible but they’re doing their best and in a way, the ones that aren’t savants are far more inspirational than those that are.

They are doing their best and they are doing well and it’s all because of you!

Financial burdens are everywhere, not just with parents of children with Autism. Imagine if your child was actually dying and you had to get a 2nd or 3rd mortgage only to lose the battle anyway… it happens… every single day. And those people, while sad, are happy that they did all they could and gave their child a good life while they had it.

Self pity is a very derogatory term these days, it is something that people tell you is never any good. It has it’s purpose, it’s not a bad thing… unless you let it consume you. You need to feel it but you need to move forward.

Your child was never lost to you, your child is right there with you, verbal or not, toilet trained or not, savant or not… they love you, they need you, they want you.

If all you can do is focus on the misery, the depression, the anger… then perhaps you didn’t lose your child, perhaps your child lost you.

Your child, no matter how many meltdowns or tantrums or hateful things they may say… they would never want you to be consumed by depression or hate. They would never want you to stop being happy, even if they think they can never feel that for themselves.

The biggest disservice you could ever do your child is to lose the love. Not just the love for them, but for your fellow man, for your fellow parent who is going through the same thing, maybe even far worse off than yourself.

Stand up, wear that smile as you count your blessings and share it with those that need it just as much or more than you do.

Happiness is contagious, but so is sadness… so is hate. Which does your child wish to share with the world? Which does your child want you to share with the world?

I hope one day my son will be proud of me for always doing my best to be happy, to make others happy and doing my best to make sure he is happy as well.

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Would you continue to let your doctor see your children if he lost his medical license?

Let say your family doctor did some very painful tests on other children that resulted in him losing his medical license… would you continue to bring your child to that doctor for medical treatment?

What if the doctor did those tests while patenting his own ‘medicine’ as an alternative to what he was hoping to discredit? What if you found out that lawyers were paying him to discredit it so that it would strengthen some court case they had going?

Ok, I think it’s fairly evident that I’m talking about Dr Wakefield but forget about who it is or what conspiracy theories you know surrounding his whole situation and imagine it was just your family doctor right there in your town.

You see, we are all too far removed from Dr. Wakefield to put it into proper perspective, in my opinion. He’s a celebrity doctor now, a martyr. Many people praise him for saying what they want to hear and so they dismiss the stories, theories and even facts.

This is not an article about whether or not he was right, it’s about what we know of a doctor… a doctor that could have been checking out your children, just as easily as anyone else’s child.

Remove yourself from stories… true or false.. and go by what has happened and imagine he was your doctor and ask: Would you continue to bring your child to a doctor that did unethical tests and hurt other children resulting in the loss of his medical license?

Yes? or No?

I’m sure, if your judgment is clouded enough by the hoopla of it all and unable to separate yourself from the situation, that you may just praise him as a God enough to say yes. But for those who have any real common sense and can put that all aside and imagine it was actually just your family doctor right there in your town, the answer must be a very absolute no. Even if we were 99.9% certain that the good doctor was just a victim of global conspiracy, we’d still say no as a responsible parent looking out for the safety of our children.

So let me ask you this, if you would not take your child to such a doctor for the safety of your child, why in the world would you listen to him and take his words as if they were a prescription from God when he didn’t even see your children in the first place?!?

If you know, as I do, that no doctor knows my child without seeing them, why would you think that this doctor holds dominion over all children without seeing them? I mean, imagine your family doctor up and left the country because of it all… would you still continue to see that doctor? Would you still listen to what he tells you to do?

Maybe it’s just me, maybe I’m the one confused by all of this. Even if I had the undisputed greatest doctor in the world caring for my child, and these allegations came out and events happened such as losing his license, leaving the country, being discredited and findings retracted… I’d stop listening to what he tells me.

I know I’m strange like that, but it just kind of makes sense to me. My own health, and certainly my children’s health, are far too important to me to be dismissing these things and hoping that maybe his conspiracy theory stories are true… cause let’s face it, if he did do all those things, he wouldn’t lie about conspiracy theories… right?? Right??

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