Tag Archives | understanding

The problem with the expression “Different, Not Less”

By on April 26, 2011 in Autism

When I saw the Temple Grandin, HBO movie, I, like many other people, quickly adopted the phrase “Different, Not Less.” It’s such a powerful statement.

Completing the spectrum

Completing the Spectrum

If you’ve followed this blog for any solid amount of time, or followed me on Twitter or Facebook, you know that I’m a rather large endorser of understanding and acceptance… the idea that those with Autism can be better served by taking the time to understand them and the spectrum of Autism itself.

Early on, as I tried to piece together all of my thoughts and ideas into this “Understanding and Acceptance” campaign that has really taken off, I began to realize that there is an inherent danger in trying to “normalize” Autism too much.

Different is not special

The danger is this… different doesn’t get insurance coverage. Different doesn’t get sensory friendly movie times. Different doesn’t get services until they’re 18, much less into their adult years.

I recently wrote about the pitfalls in defining Autism which touched on this, as some parents tried to persuade me that “disorder” was too negative to use and that we should find a kinder word.

It really bothered me that these parents were essentially hindering their own chances at getting the help they so desperately needed.

Backlash against PBS and Autism Now

I’ve been reading on Twitter how some people are quite upset at the statements made during the six part series and understandably so, some statements were a tad harsh.

But at the same time, we’re trying to get the world to wake up, stand up and take notice. Not just of how great people are even though they have Autism, but also, of just how hard it can be.

Let’s be honest, a 6 part series on Autism that paints everyone as a savant, or perfectly capable independent functional part of society… won’t do much to raise proper awareness and certainly won’t go very far in helping us parents explain to other people in the grocery store why our child is having a meltdown.

It might not have painted a very pretty picture, but it wasn’t a false picture either. It just wasn’t “all encompassing” of the entire spectrum.

The Talk and Holly Robinson Peete

The Talk did a wonderful series on Autism itself, a 4 part series, airing on each Friday of the month of April. This was a very real and very honest look at Autism as well but it painted it in a nicer picture… certainly not as dark and dreary anyway.

I haven’t found much of a backlash about it, no one seemed to be upset. Which is kind of funny I guess, because I half expected that perhaps folks with severely low functioning children might.

But those people probably just felt more left out than anything, nothing really to get furious about and certainly not worth writing articles and filling up Twitter time lines about.

Personally, I like to think of The Talk’s series as a nice Yin to PBS’s Yang… if one series can’t possibly cover all sides of the Autism story completely on it’s own, then why can’t two series split the task?

The Whitehouse calls it combat

Now, if the PBS series had upset you, then how do you feel about the Whitehouse’s plan to reauthorize the “Combatting Autism Act”? Is it really war they think they’re heading into?

The legislation, first passed in 2006, tremendously expanded federal funding for autism, allocating millions of dollars to improve diagnosis, treatment and research of autism spectrum disorders.

Really, that doesn’t sound so bad… so as a suggestion to President Obama, consider changing it’s name. Please.

Conclusion

Parents and even those with Autism that are higher functioning, Aspergers for example, are trying to fast and too hard to push passed understanding and going straight into acceptance.

There’s a very real danger in doing that… those laws won’t be reauthorized, the insurance agencies will not cover any therapies or treatments and there will be no more services out there for you.

I’m not saying that there is not a need for acceptance, there is. More of it… lots more of it. However, it has to be done properly and in due course. First, there needs to be understanding.

Understanding is what makes the system work for you, not against you. People need to be aware of the stereotypes, people need to be aware of the really bad stories… because as much as we might not like how bad of a “picture it paints”, it’s not untrue.

We can’t hide away the bad stuff in an effort to force everyone to accept people with Autism as just a little different. That simply will not work.

Don’t try to call it something else. It’s a disorder. It really is, even if it sounds negative. Don’t try to hide away the stereo types of those not as fortunate as yourself…. those people need to be seen and heard, even if it’s not an accurate representation of what is in your life.

My son, Cameron, is doing just fine and I have no reason to doubt his future at all. But I’ll never sugar coat Autism just so that people will have a warmer and fuzzier feeling about it. No, what he has is a disorder… because so long as I believe it and everyone else believes it, the help that we need will be there.

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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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Autism Awareness – What does it really mean?

By on October 5, 2010 in Autism

Just to clear up confusion first, Autism Awareness Day is April 2nd around the world and Autism Awareness Month is April for most countries. However, in Canada, Autism Awareness Month is actually October. And being that this is October, I thought I’d write out what Autism Awareness really means, at least to me.

When you hear the phrase, and many others like it (Breast Cancer Awareness, AIDS awareness, etc), you sort of laugh to yourself and think “awareness? Who hasn’t heard of them by now??”

There is obviously a lot more to these things than simply being ‘aware’ of it’s existence. It’s about being aware of the facts, aware of the people who are involved and aware of the struggles those people face.

Autism Awareness is about making people aware that it affects 1 in 110 children around the world, even more scary than that, 1 in 70 boys! I bet most people who are ‘aware’ of Autism had no idea that it was that prevalent.

Autism Awareness is not just answering questions from people but volunteering information they never would have dreamed of. For example, just last night I was talking to someone about how someone with Autism might not be able to distinguish facial features from person to person and will very likely be unable to recognize emotion from facial expressions.

They immediately asked if it’s common for all people with Autism.

The simple answer is no, but instead I proceeded to tell him that the ONLY commonality between all people with Autism is that there is no commonality between all people with Autism.

You can be sure that answer sparked up a conversation and he left informed and I left feeling a little better about how he’ll treat his neighbour’s child that has Autism.

On that note, Autism Awareness isn’t just about scary numbers either, like the ones found here, it’s about helping people to recognize things they might never have thought of before… like that strange child at all the family reunions that absolutely refuses to hug anyone, and just sits at a table by themselves… they’re not loners, they’re not strange, they’re not the odd one in the family.  They’re very much aware of everything happening all around them and they really do want to be part of it all, they just can’t. Stop judging them.

Autism Awareness is much more about understanding than it is awareness. It’s about understanding leading to acceptance.

The truth is, at 1 in 110, you’ve already met at least one person with Autism and likely didn’t even realize it. The question is, how did you perceive them. Did you judge them? Did you judge their parents? Did you dismiss them? Did you take the time to consider their thoughts and feelings?

Perhaps it would be more clear if Autism Awareness was changed to Autism Understanding and Acceptance… because, to me, that’s what this is all about.

Awareness is great for diseases, viruses, contagions… step up, learn the numbers, donate and help out.

But for Autism, and many other childhood disorders, what is truly needed is understanding and acceptance. Research, treatments, therapies… maybe even cures (in some cases and for some people)… these would be nice, but for now… right now, we need understanding and acceptance.

Only then will children and their parents not be judged, only then will there be jobs and opportunities, only then will there be funding available, more schooling options and only then will those with Autism not feel like an outcast looking into a world where they don’t belong.

Whether you are in Canada, reading this in October, or elsewhere reading this in April… speak up, inform and help to raise more than just awareness, help to spread ‘Autism Understanding and Acceptance’.

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