Sometimes a blog post just can’t properly convey how a conversation would go, so I decided to put together this little video as an example conversation between two parents.
I’m quite happy with how it turned out and hope to make some more soon. It’s less than 4 minutes, I hope you like it.
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
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.
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.
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 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?
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.
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.
It’s no secret that the Autism community is quite divided on many topics and I’ve even written before about how easy it is to offend one side or another depending on what you say.
For the last 4 months, I had been trying to organize a rather large campaign to get as many people to write about “Understanding and Acceptance” for those that live with Autism every day.
It’s done well but has perhaps also added fuel to an already hot topic. One that has turned two very good, very positive words into opposing sides of a war.
This word is often used in finite terms, such as how antibiotics can kill a virus or infection and leave you without a trace of the offending agent of illness.
The issue here is that many people with Autism (especially Aspergers) and even those that love them, feel that autism is a part of what makes a person the person that they are. It affects every aspect of their life from birth to where they are today and to remove that would be like removing a part of who they are.
When a loved one (usually a parent) is presented with a child that is “low functioning”, they would love nothing more than to cure their child. Some children (even those that are of adult age) are unable to speak, use a toilet, live independently, they hurt themselves, wander off with no idea what they’re doing or where they’re going… they’re unable to express themselves, their feelings or desires.. they’re trapped.
What results is the people from group a (Aspergers/high functioning) often resenting those from group b (lower functioning loved ones) for wishing to “remove” a part of their children. They consider it quite offensive to think that Autism is an invasive illness that needs removing.
Acceptance is the cornerstone in giving women equal rights, abolishing slavery and in squashing racism… it is therefore considered necessary to give those that are different a chance to co-exist as equals among those that are “normal.”
Many people view Autism/Aspergers as a gift, an ability to think and visualize the world in a very different way from a person without it, however, it also comes with some complications in that their senses may over load them, they are unable to socialize as easily or effectively and may need some “allowances” from people such as added patience and understanding in both their professional and personal lives.
Should people learn to accept and understand these differences, not only could those with Autism/Aspergers excel but may be able to excel much further than anyone has before them in their field!
Well, the problem is that it’s all well and good for those that can work, those that can socialize even if only a little but for those parents/loved ones who witness their child being bullied, beaten, isolated and even institutionalized because they don’t even have a chance at acceptance since they are unable to truly interact with the world to begin with, acceptance is not only impossible but it’s a source of anger.
Those loved ones don’t need anyone to accept their child. They need for their child to learn to talk. They need for their child to learn to use the toilet. Acceptance, to them, is like expecting a bird to be able to fly before it even hatches from it’s egg… much less grows it’s feathers.
They can’t even think about acceptance because without a cure, there will never be acceptance… and if they had a cure, why would they need it?
bad words
The disconnect here happens because people view the world in black and white… there is their world, and then… well, that’s it. Their world. You can’t blame them if it’s someone they love, especially a child. You very quickly learn to not care about other people’s rainbow coloured happy places when you want your child to simply have a chance at a normal life and people attack you for it.
Likewise, you can understand how someone, anyone really, would get upset when others think that you should have a part of yourself removed because they don’t think you’re good enough the way you are. If you have any self worth, any self confidence, you are more than happy with who you are and don’t care what anyone else thinks.
The thing is, there’s a world beyond our own and we can’t push our world onto other people. What someone wants for themself isn’t necessarily a reflection of what they want for you… or how they view you for that matter.
One mother that wants the autism out of their grown, non verbal child doesn’t necessarily want the autism out of a 12 year child that has a higher IQ than Einstein.
Likewise, I’m sure most people with Autism/Aspergers that can fend for themselves would never want a parent to have to take care of their child forever.
These are not bad words and certainly not a cause for hatred. We just have to stop taking things so personally. We have to learn to accept that there can be a compromise.
Perhaps a cure doesn’t have to mean “removing all” and instead can mean “removing the barriers”… implying that they’ll still have autism but maybe now they can talk, leave home, hold down a job and start a family of their own.
Perhaps acceptance doesn’t have to mean that the world just says “well, they’ll never talk.. accept it” and instead means that the world accepts that there needs to be a change in priorities, a change in how funding is not available, a change in how parents feel so alone with no where to go.
The world isn’t black and white. And the world isn’t just about you. We can co-exist… and understand that people want what they want and that they have their reasons for wanting it.
Don’t be so quick to judge, don’t be so quick to get defensive. A cure is not a cure for all and acceptance isn’t acceptance for all. Either support each other in their goals and desires or don’t. There’s no reason to hate.
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…
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.
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:
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
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