Tag Archives | awareness

Autism awareness? I live it every day

Not a lot makes me cringe more than seeing/hearing/reading a parent of a child with Autism say that they don’t bother with Autism Awareness Day/Month because they don’t feel they should tell others about Autism since it doesn’t affect them.

autism awarenessI’ve read more tweets and posts this month than I’d like to from parents giving a multitude of excuses why they haven’t gotten around to it, or haven’t bothered or feel that they simply shouldn’t attempt to raise awareness of Autism… and that’s kind of sad.

How can a person recognize the signs in their own child unless aware?

There’s a lot of debate within the Autism industry as to whether or not numbers have risen (at least in part) due to the fact that people are simply more aware of what to look for, recognize it earlier and thus, are more likely to get an official diagnosis.

There’s good reason for that debate.. it’s because it’s true that greater awareness is what leads to people being able to understand why their child won’t look them in the eye, doesn’t respond to their name, doesn’t talk yet, separates their blocks by colour and lines up their toys in a perfectly straight line across the living room.

Finding the support and information they need

After a diagnosis, most parents feel extremely lost as they’re put on waiting list after waiting list and worse than finding no answers, they find a lot of contradicting answers.

If you and I didn’t speak out, and speak loudly, they’d never find us. And if they never found us…. well then, they truly would be alone.

Waiting lists don’t explain to parents the benefits of weighted blankets, the gf/cf diet, the necessity for strict routines, how to handle IEP meetings and so on and so on.

Will your child forever be a freak or will people understand him/her better one day?

How can we expect parents to stop judging us and our children during those grocery store meltdowns if they never learn about Autism? How can we expect our childrens teachers to have more patience or even recognize the signs themselves? How can we expect more random people to step up and offer gymnastics, swimming, skating and other community type programs just for our children with Autism… simply because they want to help?

People won’t just look at your children differently… they’ll look at them as weird, freakish or even worse because if they’re not aware, what else are they supposed to think?

Conclusion

No, maybe the meltdown happening in your living room isn’t anyone’s business but that of your own family but that shouldn’t mean not raising awareness at all.

By not doing your part, you may be leaving one troubled child undiagnosed… you may be leaving one parent lost with no one to turn to… you may be letting some innocently ignorant person incorrectly judge another person, making them feel like a terrible parent.

Worse than all of that, you are indirectly affecting your own child’s future because one day your child will have to face those people you didn’t bother to share your burden with and those people won’t understand him/her. Those people will judge your child and judge them harshly.

They say that if one person recycles everything, little change is made in the world but if everyone recycles just one thing, a very significant change is made in the world.

Same goes for Autism Awareness. You don’t have to get on national television or scream from the rooftops… it’s not about invading people’s lives. It’s about sharing so that those that want to listen, those that want to hear it, those that seek it out… can find it.

You may live it every day and those you’re attempting to educate don’t… but maybe they will one day. And maybe, just maybe, your voice will be the voice that makes a positive impact on their lives that lasts a life time.

Comments { 6 }

Awareness is not enough. This is what Autism is to me

Awareness is not enough.

We (The Autism Community) need for you to know what Autism is.
We can only achieve that through Autism Understanding and Acceptance.

Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.

This is a call out to the world to understand the people and the disorder.
This is a call out to the world to accept the people and the disorder.

You can not understand or accept the people until you understand and accept the Autism they have.

Autism is a part of who they are.

The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored.

Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.

The charities, the organizations, the groups, the parents, the people with Autism themselves… we ask you… no, we need you to know what Autism really is.

Today, we ask for your Autism Understanding and Acceptance.

This is what Autism is to me…

Autism Understanding and Acceptance

Cameron Duncan

Autism, to me, is a part of who my child is… for better or worse, beautiful or ugly. Yes it causes extreme temper tantrums, misunderstandings, dietary issues and more… but it also shows me a side of life that I would have never seen before otherwise. A whole new profound way of looking at the world.

Autism makes it very hard for my child to know what other people may be thinking… a look on their face and body language aren’t enough. Autism also makes it very hard for my child to understand the concept of time. To tell me about a year ago, he refers to it as “a lot yesterday”.

It’s because of Autism that my son will kick and throw things as he enters a rage filled meltdown that is completely beyond his control.

Probably what hurts most, however, is the looks and comments and judgments that others make while we’re in public. Whether it be a meltdown at a grocery store or even a physical activity where my son clearly isn’t as “in control” as the other children. Being different, to most people, is a negative thing.

It’s for this reason, that Autism to me, has become my purpose. Actually, my son (both of my boys to be honest) are more important than Autism itself, but they’ve given me my purpose in life… to not just raise awareness of Autism but to try to help others to understand it better and to accept those that have it.

Perhaps if I can reach enough people, those looks and comments and judgments will begin to go away. If I can reach people in my own community, I can help people accept my child..  if I can reach people around the world.. I can help many children.

And not just children… but teenagers in high school that are being bullied or even beaten… and adults too that may still be living with their parents or at the very least, struggling at keeping jobs and a social life.

Since my son has been born, and more so, since we’ve received his diagnosis, I’ve learned so very much about Autism and yet I still have far far more to learn.

And this is my meaning in life… this is my purpose.

Not to change my child because my child is wonderful, amazing and every bit as deserving of a everything that you and I have as we are.

My purpose is to change the world around him… by talking to anyone that will listen. By giving them just a little bit more understanding… and hopefully, helping them to accept my son and everyone else with Autism.

That’s what Autism is to me.

Comments { 3 }

Parents Magazine completely forgot about Autism Awareness Month… and then…

While checking around the various social networks and news sites, I came across this About.com news story: “Parents Magazine Ignores Autism Awareness Month“. The good news is that this is likely not going to be a mistake that they repeat next year because they got an ear full!

Autism advocates quickly “liked” their Facebook Fan Page, not with the intention of liking them, but being able to voice their disapproval (I think disgust is a better word but I’m trying to be nice).

The awesome folks at Try Defying Gravity have been covering this expertly and really helped with the push towards getting this resolved and resolved, it is… well, sort of.

Here is the statement, in the discussion group page of Parents Magazine Facebook Fan Page:

We would like to say again how grateful we are for your feedback and for the reminders in the last 48 hours that autism is not just 1 in 110—it’s about real people and real families. We feel that one of the best ways we can educate our readers and raise awareness for autism is through real-life stories. This is why we want to give you the opportunity to share your story with us and our audience as part of a blog series in addition to our planned articles. If you are interested in participating, please email FacebookSupport@meredith.com with the following information:

• Your Name
• Child’s Name
• Living with Autism: Your Family Story (Please keep stories to 500 words so we can include more voices in the blog.)
• Photo of your child/your family (*Optional. We will include one photo if you’d like.)
• Link to your personal blog/website (*Optional.)

We are very sorry for making you and your families feel dismissed or unappreciated. It was not our intention. Autism is an issue worthy of Parents magazine’s attention and we hope we can move forward together to raise awareness throughout April.

They screwed up, they know it. But does a discussion page post tucked away somewhere in the middle of page 2 really make it all better?

I think they could do better.

But instead of waiting on them to do better, let’s follow in Try Defying Gravity‘s example and do better for ourselves.

Update your blogs about this, share this on Twitter and on Facebook and let’s get their hidden message out and give them so much to write about that they’ll need a double thick issue, or better yet, need to devote the next 2 months to Autism.

Keep in mind, I am passionate about this because their response ties in perfectly to what I’ve been trying to do, and that is to get people to share their stories on April 2nd. The Awareness is Not Enough campaign is going strong and this is the perfect opportunity to get your story out there to the world.

If you’ve been wondering how you can best share your story, this may well be it. So email them. Their email address is in their statement above. Let’s make sure this is a mistake that they never ever make again.

Comments { 6 }

Excuse me, your Autism is showing

Some people call it the “invisible disorder”, other people will say to you “your kid doesn’t look Autistic”… the plus side to this is that if your child progresses well enough and is capable of becoming independent later in life, no one ever needs to know.

The down side is that each time you hear it, you always feel a little insulted, a little frustrated… a little alone.

knowledge + ignoranceThe problem is that Autism isn’t invisible, it does show itself… other people just don’t know it.

My wife’s gym has 2 classes a week where children are invited to come along with their parents. They do exercises and dances and so forth to be active. It’s not too crowded and the music isn’t too loud so my wife decided to bring along Cameron to give it a try.

Cameron tried his heart out to do the moves that he saw other people do, he tried his heart out to have fun. But that invisible disorder that no one seems to see? Everyone saw it.

Cameron’s hands flailed as if totally beyond his control. His tongue was sticking out the entire time due to his intense concentration. He completely shut down and didn’t even try if something looked like it was something he’d never be able to do. When he got happy, he laughed well above and beyond what others did. When he got sad that he couldn’t do it, he got sad above and beyond what others did.

My wife was left wondering whether or not she is supposed to explain to the other parents why they saw Cameron differently from the other children. She was left wondering if they were quietly thinking hurtful things about her… or about our son.

Cameron had a great time and was eager to go back. He’s still young, he doesn’t see their gazes, he certainly doesn’t know what those gazes would even mean and, hopefully what will last a long time, he really doesn’t care.

Still, as I tucked him into bed that night and gave him his hug and kiss, I couldn’t help but think about tomorrow and all the days after… is this what is in store for him in all the things he will do?

Is this the result of people not being aware of what Autism really is? Is this more a case of them forgetting about Autism entirely when they see a child that isn’t “normal”? Or is it just human nature for people to feel negatively toward anyone that’s different?

Perhaps it’s just us that “feels” those gazes when perhaps they weren’t really even there, or at least, not as bad as we thought they were.

What really matters is that this invisible disorder that no one seems to see is not invisible, it’s out there for all to see every time we go some place or try to get involved in something.

I can’t make the world stop judging anyone they see as different, anyone they see as doing something that’s not quite normal… I can’t stop the uneasy feeling I get when I worry for my son having to deal with that on his own as he gets older.

One day, he will notice and he will know what it means and he will care.

All of this, and my son is considered “high functioning” at this point. That puts me at, or close to, best case scenario realm. It’s oh so much harder for those who’s children have it even worse.

Sometimes I think it would be easier if there was some visible sign to Autism. Perhaps then people would finally get it.

Comments { 10 }

Awareness is not enough! We need Autism Understanding and Acceptance

For the last couple of months, a quiet movement has been going on behind the scenes with several Autism charities and companies.. a movement to hijack and upgrade Autism Awareness Day on April 2nd.

What all of these companies need is for every single man, woman and child that has or is associated with Autism to share a message on that day. The message has 2 parts:

  1. A common message, shared by all, uniting the entire community in a single voice. That message? Awareness is not enough. People have to KNOW what Autism is.
  2. A unique perspective on what Autism is to you. Your experiences, your story. No matter how beautiful or ugly, whether you see Autism as a gift or a cure… you tell the world what Autism is to you.

The goal of this is to show that we’re not as divided as most people think we are, especially those pesky media outlets. We do support each other, we do fight together and we do speak together.

At the same time, we will educate the world once and for all on exactly what Autism is… it’s wonderful and terrible, beautiful and ugly. People will look past the media’s view of Autism (which generally is the image of a 2 or 3 year old child that was just diagnosed and the young family that now has to deal with that diagnosis) and see what the media forgets to show the world.

This is NOT an effort to tell people that we do not need a cure, nor is it to tell the world that we do need a cure. It’s not a place for debate over current research studies or treatment methods. This isn’t about you, this isn’t about me and it’s not even about the charities/companies that have agreed to get involved.

This is about Autism and the people that have Autism. Who they are, how it effects them and their lives and most importantly, how the world needs to better understand them and better accept them.

Please join in, spread the word, share the message and tell your story. Write them on your blogs, newsletters, press releases, tell them to people… we are also going to provide a means of sharing your story with the media!  Imagine, millions of people sending the same message to the media all at the same time. They’ll be shocked!

Let’s make sure the world is far more than aware… let’s make sure they KNOW what Autism really is.

Join here, see who’s involved and what the shared message is. Let’s come together to share ideas and make this a day that the world will never forget: http://www.facebook.com/AwarenessIsNotEnough

Autism Understanding and Acceptance

Autism Understanding and Acceptance

Comments { 5 }