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.

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Quantifying Friendship

I pick up my younger daughter and her classmate from their school each afternoon.

We drive to oldest daughter’s school in the next suburb and collect her.

Each afternoon follows a set pattern, pick up two, and drive the same roads, park in the same place. Walk to the others classroom, play the same games, bell rings. Leave with three. Get in car in same order, drive same route, and offer the same snacks.

Three children on the autism spectrum, I try to minimize changes in routine, avoid conflict.

Each afternoon the conversation follows the same route. Topics dictated by the landscape we drive through. Street signs, letter boxes and houses the visual route markers to our verbal dialogue.

We drive out of the first school, the two clamouring for snack. As we approach the T intersection the ‘bad thing about today’ is revealed – a child roaring like a dinosaur, the teacher changing the actions to a song.

As we pass the swimming school the two begin to talk about ‘my best day’, seeing a snail in gardening class, playing a with favourite toy.

While I wait to turn into the other schools car park, both voices in the back seat express concern over what will happen if we park in a different place.   On good days we get our special parking space, on the rare bad day I spend a few minutes reassuring them it is okay to park in a different place.

We walk into the other school, they both bolt for the playground, I follow, we play the same game, the climbing equipment is the boat, and the ground is the sea. I am the shark, squeals of feigned terror as the shark approaches, giggles of delight as they escape the shark.

The bell rings, two sets of hands reach up and cover two sets of ears, two voice exclaim ‘too loud’.

Then the rush of children out the classroom doors, loud joyful noise as they escape the school room again. We wait, oldest daughter is always the last out, organisation is a challenge, easier to wait until her classmates are outside and the room is quiet, and then she can think, remember what needs to be packed to come home.

Finally we are on our way again, three in the car. Slowly we exit the busy car park, all three voices talking about their day, all three demanding that the others be quite and listen.  We turn the corner towards the train tunnel, oldest recounts why she has named it ‘The Echo Tunnel’.

Another corner, as always this corner turns the conversation towards fairies, what attracts fairies, what repels, where to look for them. Every afternoon the conversation follows the same route. Topics dictated by the landscape we drive through. Street signs, letter boxes and houses the visual route markers to our verbal dialogue.

As we approach the duck pond my heart sinks in anticipation, a corner is turned, the yellow sign with Mama Duck and two baby ducks is passed “Excuse me, are we friends?” the question is asked.

Oldest daughter replies “No. You are my sister’s friend.”

Younger sister answers “You mine friend.”

Classmate responds in matter fact voice “oh. Okay then.”

Each day I insert my social story voice into their conversation “It is okay to be friends with more than one person. Your sisters’ friend can be your friend too.”

We drive under another bridge, I’m ignored as always, conversation turns to invitations to come over and play, lets hunt fairies in the garden.  As we pull into classmates drive way I’m besieged by petitions to please can we stay, please can we play.

Weeks turn to months, every afternoon the conversation follows the same route. Topics dictated by the landscape we drive through. Street signs, letter boxes and houses the visual route markers to our verbal dialogue.

Then one day, we approach the duck pond. My heart sinks, the questions is asked “Excuse me, are we friends?”

And there is a pause, I slow down, ears alert at this change.

Youngest daughter answers “You mine friend.”

The two turn to oldest daughter, she has not spoken, she is thinking, I hold myself silent, hoping for change.

“I think we are” she says “You believe fairies and so do I, you have a little sister with autism and so do I… is that enough things to make us friends?”

He listens quietly, seriously and after due thought he responds “I think maybe we need more things.”

We go under the bridge but the conversation does not change. Something new is blooming here on our drive home.

All three are silent, thinking.  “How about ten things, if we have ten things that are the same, would that make us friends?” oldest daughter asks.

“Yes, it would, ten things is good” he answers

And a rising babble of voices explodes as the three work out ten things that are the same.

Every afternoon the conversation still follows the same route. Topics dictated by the landscape we drive through. Street signs, letter boxes and houses the visual route markers to our verbal dialogue.  As we pass the duck pond the same question “Excuse me, are we friends?” But now we have a different answer, a list of ten ways they are the same, ten things to make a friendship.

 

 

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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.

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Inside the mind of a child

I often hear people saying that they wish they could be 5 again, when their biggest concerns were which colour M&M’s to eat first… or not being able to play outside because it’s raining.

Yes, life certainly doesn’t get any easier when you become an adult but that’s no reason to dismiss their concerns as unimportant. It is all a matter of relativity… the biggest concern in your world is just as important to you as the biggest concern in someone else’s world… even though hey might not measure up to an outside observer.

Allow me to put it another way… what is happening inside the mind of a 5 year old is not just as real as what’s happening in your head, it could be more so and thus, an even greater concern.

You and I are limited by the bounds of reality… that is to say, we know the rules, we know what will and won’t happen as we face each situation. To a 5 year old, their imagination is the limit and there is no limit to a 5 year old’s imagination.

Let me give you an example from just a few hours ago, when my son woke up at 5:30am.

I was awoken by the sound of foot steps but not regular foot steps… tip toe steps. Yes, I’m a light sleeper when it comes to my boys. I heard a few steps and then it was gone. At this point I had to wonder if I heard it at all, if he had just stopped in the hallway, if he was just going to the bathroom… it’s a lot to wonder when you just woke up.

A moment later, I heard his little voice coming from the living room. “Hello?? Where is everybody?? Hello!!!! I’m all alone.”

He sat on the couch, in the dark, convinced that he was all alone in the house… that we had all abandoned him.

My first instinct was to say “silly boy, we were just sleeping in the other room, same as every night” but to see how sad he was, he was completely and totally convinced that he was now going to live the rest of his life alone. I don’t know what dream he was having or if it was just some random feeling he got when he awoke but in his mind, it was very very real.

You and I would know to check the other room, you and I would know that something like that just doesn’t happen. To a 5 year old, who’s imagination blurs the lines of reality and has no limits to it’s endless possibilities…. it was far more real than anything that we will likely experience as adults. He was certain, beyond a shadow of doubt, that he was alone.

A child’s mind can create a world of extremely large, very friendly dinosaurs… or it can create a a world of very scary monsters that only come out at bed time. Maybe it’s all in their head and maybe it’s not as scary as tax season is to us but to them, it’s far more real than anything we have to deal with.

Don’t dismiss their concerns as trivial compared to your own. Imagination can be a very powerful thing if not respected.

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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.

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