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

By on April 2, 2011 in Autism Awareness

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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Awareness is not enough! We need Autism Understanding and Acceptance

By on February 14, 2011 in Autism Awareness

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

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Freeing the soul that is locked within

By on January 24, 2011 in Autism, Autism Awareness

Low functioning (severe) individuals with Autism are often referred to as being trapped in their own world or being in a body that simply doesn’t work the way it should. There is a new movie (Wretches & Jabberers) coming out that I think will illustrate this concept beautifully.

Most recently, there was a news article referring to how Autistics really do understand you even if they can not speak and you do not get a response. Honestly, Carly Fleischmann probably is the best example of this to date… a young girl that was unable to speak for most of her life until she approached a computer keyboard and began to type out full, coherent sentences.

There is a lot going on here that I think a lot of different people easily forget. Here is how I see the forgetting being broken down:

  1. Parents of children that have Autism yet are still higher functioning, or even with Aspergers, often forget that other parents have children that hurt themselves, others, have yet to be toilet trained or even speak.
  2. Individuals with Autism/Aspergers see it as a gift as well as a curse, sometimes simply as a gift.. I’ve even seen some go so far as to think they’re superior from everyone else. To these people, many times, they see no reason to do anything at all except welcome the gift for what it is. This can make some parents quite upset when their children are so bad off that they see it as nothing but a curse.
  3. Parents of the low functioning children sometimes forget that their children is likely very aware of what they say and do around them. Often talking to others as if they’re not there, when they are… getting upset at them for something beyond their control, for saying hurtful things out of frustration… they forget that they wouldn’t say these things if their child was listening… they are listening.

There are a couple of key points to all of this that I think are often missed as well, not on purpose and certainly not at all times… but from time to time, we let it slip out of our memories and thoughts.

As difficult as it is to have a special needs child, it is still just as hard or even harder to be that child.

We often get wrapped up in the stress that we forget our child is even a human being.. not literally, but figuratively. We forget their thoughts, emotions and own frustrations are in there… we don’t see it or hear it, but they’re there. They’re in a prison right there beside you and they can’t get out. You think you have it hard that they won’t give you a hug? Imagine how hard it is that they so wish they could… but can’t.

There could be brilliance struggling to get out.

I often say “No matter how severe, never underestimate a person with Autism. There could be brilliance struggling to get out.” I was corrected that I should say “is” as opposed to “could be” but again, we have to be realistic… not every person with Autism is brilliant. They are certainly wonderful, beautiful people with unlimited potential… but not everyone is brilliant, Autism or not.

But in the very least, there is an average person in there… brilliant or not, they’re amazing in their own right. Don’t expect there to be the next Einstein or Mozart in there that you have to release… they’re probably not. But they are still your children.. your perfect children.

And they don’t need the pressure of greatness pressed on them. They simply need to just be. They simply need to have your acceptance, your understanding and most of all, for you to never forget who they are. They’re in there.

This is where I feel there needs to be a cure.

Not necessarily a way to strip away Autism or even prevent it, but for right now, we need a cure to break the shell.. to let these children (and adults too!!) be able to not only speak but express emotions, function properly and become independent.

I don’t care what vaccines might do, or what living close to a highway may cause… all of those studies talk about risk. As in, percentage points. None of those studies mean that you do X and you’ll have a 0% chance of having a child with Autism. And until that does come to be, we need to be focusing on getting those low functioning individuals talking.

Cure the curse, leave the gift.

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The dangers in trying to define the “face of Autism”

By on December 16, 2010 in Autism Awareness

I’ve found over the years that the real trick in raising Autism awareness is in describing what it is to people. It’s such a diverse and complicated subject that we can find that we end up contradicting ourselves, confusing our listeners or worse, simplifying it (dumbing it down) so much that it really doesn’t do it any justice.

In my opinion, ‘spectrum’ isn’t nearly vast enough to explain all of what Autism can encompass… perhaps Autism Universe Disorder would have been more accurate. I actually read one time where some doctors said that “cloud” is more accurate than “spectrum” since it suggests a 3 dimensional range of possibilities.

Anyway, I digress…

The real problem with it being so varied is that for most of us, our own loved ones (usually children) are our point of reference. We watch the movies, read the books and do the research but the one we care about, right in front of us, is the true face of Autism in our world.

From there, we branch out to become supportive of each other, to share stories and advice and prove to be quite successful in that endeavour but ultimately we all eventually find that one person that sees Autism in a very different light than we do.

Whether we find our children to be amazing people with limitless potential or we see our children as being extremely low functioning victims of a life long paralysing disorder… we’ll find others out there that see Autism quite differently.

The real danger in this is that one will feel pity for the other, or resentment, or jealousy, or… well, you get the idea. A conflicting opinion of something of such epic importance in our lives can make for a very heated discussion if not handled with care.

To illustrate this point, I bring up a well known video that Autism Speaks once produced, where it tried to paint a picture of what Autism is.. giving it not just a face, but a rather eery voice:

httpv://www.youtube.com/watch?v=HDdcDlQVYtM
http://www.youtube.com/watch?v=HDdcDlQVYtM

Now, if you have a child that is doing well with Autism/Aspergers, or you have Autism/Aspergers yourself, you will likely be quite angered and even offended by that video. However, if you have a child that is severely low functioning due to Autism, there’s a good chance that it strikes an all too familiar chord with you.

The real tragedy in this video is that it ever tried to put a face on Autism in the first place.

The good news is that for some of us, myself included, hard work can actually help you go from agreeing with that video to not agreeing with that video as your child progresses… my son, Cameron, went from non-verbal at 2 years old to being one of the brightest and most social in his class at school.

You see, 3 years ago, I would have watched that video and understood quite well what they were attempting to do… but today, for me, this is the face of Autism that I see:


http://www.youtube.com/watch?v=zrbtWr6oVf0

I do my utmost best to not offend people as I understand how hard it can be if your child is unable to talk to you or show that they love you but I can also understand if your child is memorizing Pi to 20,000+ places. It’s a very wide spectrum… a universe wide!

The next time someone asks you what Autism is, do your very best to explain it clearly, concisely and without bias. Not for my sake, but for your own as well as the people that might hear/read what you say.

Our children are not a victim of a scary voiced predator nor are they endowed with super powers making them superior to the rest of us. But they are somewhere in between… and it’s a pretty big space in there.

The face of Autism is as unique as the face of the person that you see it in.

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Communication Shutdown, Why I’ll be online Nov 1st.

By on October 28, 2010 in Autism Awareness

Ok so, I’ve argued with myself about whether or not I’d ever even discuss this topic, much less write about it but today I’ve volunteered my time to be a part of a 24 hour “shout out” on November 1st. It’s for this reason that I think it’s only fair that I explain why. Also, doing so just days before the actual day will help with anyone wondering if I am discussing this just for search engine traffic or so forth.

The Premise

no communication

No Communcating Nov 1st

The idea behind this ‘event’ is that people should not use Facebook or Twitter for the entire day of November 1st in an attempt to experience what it is like to lack the communication ability of those with Autism.

You visit https://communicationshutdown.org/ and donate some money, they send you a program that you install and it will update your Facebook and Twitter accounts to announce that you are not going to be there that day in the name of Autism.

You spread awareness, you experience the lack of communication, someone gets the donation, the world is happy.

Speaking for those that can not speak for themselves

The whole idea of Autism Awareness and Advocacy is that we speak out for those people/children that can not speak for themselves. As such, it makes very little sense to silence ourselves for them.

Also, I’m not even Autistic but even I feel it’s pretty insulting to think that not visiting a couple of websites could ever give you any insight into what it’s like to have Autism. That’s like saying that because you were in chess club, you know what it’s like for children in bad neighbouurhoods to get mixed up in violent gangs.

Not saying anything is the new “what’s your bra colour”

Remember last year when Facebook women started putting their bra colour into their status as a fun little “shhh… don’t tell the boys” game? And after most said it was childish and stupid, they attached the Breast Cancer Awareness mantra to it and suddenly it became a worthy cause to participate in.

The problem was that most of the guys and even a very large number of girls simply never got the message. The problem with “shhh” is that noone knows why you’re “shhhh”ing unless they ask and really, who cares enough to ask? No one.

So this communication shut down will very likely become the next viral campaign that totally went by most people’s attention spans without a second glance until some other day when they caught a news article or someone says something off handed and they go “oh! That’s what that was about?”

Flawed target audience

If this is truly aimed at giving people a taste of what it is like to have Autism, why would I need this? My son has Autism. Many of the people being asked to participate have Autism themselves. Do we really need this exercise to experience it?

It seems to me that this needs to be focused on the general public more than those of us that are already advocates or that already have Autism. It’s a great starting point as we can reach out to more people than they could alone but obviously the approach was flawed. We should have been given tools (banners, ads, market material, links) to prompt readers rather than asking us to just donate like any other person.

Donation Information

So the site lists a rather impressive list of charities/organizations which will be receiving these donations… it even promises that your donation will go to a place that is in your country. This is impressive. View partners.

What is not impressive is that we have no idea who the people are putting this on, nor how accountable they will be. Will we see records and breakdowns of where the money went? Will we get autobiographies of those involved? Do we know what will be funded with the money?

Furthermore, why can’t we just donate to the charity/organization directly and keep on Tweeting and Facebooking? Facebooking? Is that right?

Also, why can’t we just have the program to update our accounts and post about our attempts at Autism Awareness without having to donate? What if I want to participate because it’s a worthy cause and want to get the experience but can’t afford money to donate because we are living with Autism ourselves and could probably use that donation money for our own family?

The Alternative

Some blogs are pushing for an explosion of shout outs, a total opposite to a communication shutdown. They’ve even come up with some tags #AutismShoutOut to use on Twitter to show your support.

To me this makes a lot more sense but shouldn’t this be done in April? Autism Awareness month? Why is this being done in November anyway?

I don’t think I can endorse this approach either really, since it will likely get quite annoying and/or repetitive after the first few hours. But it sure does beat not saying anything. Cause no one will know why and you can’t tell them!

What I am doing

As I said in the first paragraph, I have decided to participate in “Communicate and Educate Speak out and Speak Loudly” 24 hour chat held by http://thecoffeeklatch.com/ on twitter: @TheCoffeeKlatch

I will be co-moderating from the 4pm to 5pm EST hour, they’ve organized that there will be moderators for an entire 24 hour period from 9am to 9am. This means that information, questions, advice, myths, stories and more will be shared for the entire duration.

If this isn’t the opposite to not communicating for 24 hours, I don’t know what is.

And so, I’ve decided that since I agreed to become a part of it, I should explain why I made the decision. Not that I owe it to anyone, but that I feel this decision could raise the question.

My suggestion for you?

I have three.

There’s really nothing wrong with taking part in the communication shut down. It will raise awareness, they will get donations to good charities. If you wish to do it, good on you. You’re doing something great for the Autism Community.

There’s nothing wrong with not taking part in it either. There’s nothing wrong with seeing flaws in the plan and doing the exact opposite. Speak out, speak loud and speak proud. Raise awareness as you see fit. If you do wish to take part in the chat, in which I will be a part of, simply add #tck to your tweets or use their custom chat room which will help you streamline the conversation much easier: http://tweetchat.com/room/tck

Finally, there’s nothing wrong with just going about your day as you always have. Talk Autism, talk sports, family.. anything and everything. You are involved already, you’re already doing your part. Feel proud in that. You should.

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