Tag Archives | support

Social Media Could Not Have Come at a Better Time, Let’s Use it For Autism!

By on June 23, 2010 in Autism

It’s sadly ironic that a disorder affecting 1 in 110 children (by current estimates) can leave you feeling so alone. How can a world of almost 7 billion people have around 63,000,000 Autistic people in it and still leave us feeling like we have no one to talk to and no one who will understand what we’re going through? Mathematically, it seems ridiculous.

But the truth of the matter is that we do feel alone, we do feel isolated and we do feel like no matter how hard we try, we just can’t get people to understand what it’s like. More so than that, we feel lost as there are far too few programs, organizations and professionals for us to talk to.

Luckily, for many of us, we have already had a fair amount of experience with the internet and have grown accustomed to seeking out information for ourselves, some are even adept at researching for more information, or keeping themselves up to date on current trends. But it’s only been in the last 3 or 4 years really that our greatest tool has been brought to us, social websites!

Now, more than ever, we can connect and share stories and information with each other one on one or in groups. Facebook and Twitter are my personal favorites and I have received an overwhelming amount of support from the wonderful people I’ve found there.

I highly recommend using these and many other social sites as tools in your quest to add more information to your arsenal, and even to help gain that extra support, motivation and inspiration you may need to get you through some of the tougher days.

I do have a couple words of warning however, from my own personal experiences.

  1. Beware the temptation to win the popular race. This is especially tempting on Twitter where you see that # next to your Followers indicator and you just want it to go up and up and up. The truth is, you’re seeking knowledge and information that is extremely important to you. What you need is a community of followers and those you follow that will give and take from you the strength and information that will keep you all going. It’s not a popularity contest, as many on these sites will have you believe.
  2. Don’t let anyone “TELL” you what to think. It’s very easy to see a Facebook fanpage with hundreds of thousands of fans, or a Twitter account with hundreds of thousands of followers and think that they must know what they’re talking about, so what they say is obviously right. I think, in most cases, they would never do that and would only do their best to advise or share information and let you make your own decisions. But there are some out there who try to make up your mind for you, and try to ‘convince’ you to think the things they think. Remember, no matter the ‘popularity’, these are just real people out there like you and I, and they have no right to tell us what to think.

Don’t tell yourself you’re a nobody and shouldn’t contribute, because all of the people in the community are created equal. Perhaps they have done more research than you have, perhaps not… but they’re real people. And as a community, I’ve never once felt like I wasn’t appreciated for giving my two cents. It’s been a truly remarkable experience actually, intimidating at first but as I started to receive welcomes, feedback, support… I found that these places aren’t so bad.

I always pictured them as prank places for kids, you know… where teenagers go and talk about the latest pop stars and share dumb jokes but in all reality, there are some very very intelligent people, extremely supportive people and an absolutely amazing community that you can be a part of.

I really do hope you take the plunge, it’s so worth it.. and when you do, visit my fan page: http://www.facebook.com/autismfather
Be sure to scroll down on the left hand side and view the “Favourite Pages” section to find some truly wonderful fan pages full of information, people and stories.

Also, visit my twitter lists as they are filled with people just like you who would love to hear about your experiences, and may have advice or may even learn some things from your story themselves:
http://twitter.com/autismfather/autism-parents – A list of people who have at least one Autistic child. These people know and understand what you are going through.
http://twitter.com/autismfather/autism-resources – A list of resources where you can get the latest news, research, events, charities and more stories.
http://twitter.com/autismfather/amazing – This list is called ‘amazing’ because that’s the only way to describe the people on it… they have Autism, and they share their experiences on Twitter.

1 in 110 is staggering… you are most certainly not alone, not any more. Join us and become an active part of the community. Every person that does makes it stronger.

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Sensationalizing Autism? Hard to Believe, But it Happens

By on June 3, 2010 in General

I think, sometimes, we forget about just how bad it really can be. The first thing you’re told when your child is delayed in speaking is that Einstein didn’t talk until he was 4. Then we hear about other amazing ‘savant’ Autistic people, even watch the Temple Grandin movie and start to think that maybe it’s not such a bad thing.

Then you get out into the Autism community and start talking to other people and even discover people with Autism themselves, discussing, sharing, informing… being involved. Many of whom are very proud of being Autistic actually, they recognize that they’re not less than anyone else, that they actually have advantages even over some people.

When you’re not doing that, you’re doing your own family thing with your own Autism issues and you get excited when your own child hits milestones, reaches achievements and so forth.

You can very easily get lost in it all because those that are unable to speak, those that are unable to leave the house without being in danger, those who have extremely stressful situations at home with their completely out of control children…  we don’t get to hear from them. They don’t get the time to join communities or to share experiences. Many of whom don’t even want to share because it’s simply too hard.

I think we can very easily sensationalize the very thing we’re all fighting so very hard against. We get so caught up in all the wonderful news, in all the good that can come of it that we easily forget just how ugly and terrible it can really be. Out of sight, out of mind, right?

I was recently watching twitter and a few sites where people with Autism themselves were expressing how proud they were but more so, going on about how others should be proud, how they are fully capable of everything that anyone else is capable of… and I couldn’t help but wonder how much that would hurt those parents out there who’s children simply never will be capable of much, much less everything that you or I can be.

How hurtful would it be to watch your children hurt themselves and constantly be in a rage… and then hear this person go on and on about how wonderful it is?

I don’t know what I would suggest to either as I certainly would never want to suggest that the person not be proud and not be loud about it. I mean, shout it from the roof tops if you’re capable! It’s truly wonderful.

I guess we just have to be sure that no matter how proud, how happy, how amazing the accomplishment, no matter how sensational it can seem… there is an ugly side. There is a reason that Autism needs to be prevented.

We fight for our children, we fight for ourselves, we fight for those who have yet to be diagnosed… but most importantly, we fight for those who can’t fight for themselves. Those who are either lost within their own minds or too busy doing everything they can for their children that they can’t be out there fighting for everyone else.

When you talk about Autism with someone else, either casually or in the Autism community, remember those people and the people who are happily having children that may soon discover that their lives will be harder than they ever dreamed possible.

They need our support even more than the rest of us, even though their voices may be the quietest.

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