maandag 21 juli 2008

How Ignorance Becomes Harmfull in the Name of Profit!

I received an email reading:

Hi, my name is Litsa Kamateros. I live in Montreal Quebec ,Canada. I am embarking on a project with my co-writer Lea Schizas on the subject of autism. Throughout the upcoming book you'll read personal accounts from parents and teachers from across Canada and the world, and how they've fought to try to get funding for their children. Their stories need to be told and heard.

Change is not only needed in Canada, as we discovered but through the entire world. "Autism Epidemic: Shaking the System" is dedicated to all who have physically and mentally challenged their governments to bring about a quicker assessment time for their child, and help defray the costs for therapy that ensues.

Our intent is to bring about awareness and a voice to help them battle this indifference by many in the higher ranks. The cry of the parents of autistic children: "Help us help our children."Think of "Autism Epidemic" as your "Personal Reflections of the Autistic Soul."

We want your stories told, we want to help you bring your voice the world,we want our readers to hear what you have to say and possibly unite in a greater voice for change across the world.

Please spread the word to people all over Greece that are suffering and who might want to share their stories in our upcoming book. We must all unite world wide to make a difference for our families and our beautiful children. By the way I have seen your e-mail on Autism Vox. Thanks once again, and please spread the word about our project and our mission.


Now here are MY thoughts on this email and this whole project:

First of all people who create a website and are about to publish a book using the name THE AUTISM EPIDEMIC to create sensationalism with additional words such as "suffering," "the cry of parents of autistic children" and "beautiful children" to generate easy profit is definitely out of my "to read" list!

Second, writing such reactions as this "thinking of 'Autism Epidemic' as your 'Personal Reflections of the Autistic Soul'" is not only stupid, but down right arrogant!

Can't they understand that they are working on second and third hand observations? That their idea of what goes on in the Autistic Soul, is based on how parents see their kids from outside in, NOT inside out! And then they, the authors, will use these second hand witnesses to write a book, which will be like a third hand view to the issue.

Why all this? Simple. They did not ask the FIRST HAND point of view, which comes from the autistics themselves!!!

Thirdly, who are these authors?

Let's see from a reply they posted on their website:

Angela: Hi to you all, I would like to ask you what you have to do with autism, I mean are you parents of autistic children or you are simply authors and just want to write a book about autism?Thank you, Angela

Lea Schizas: Hi, Angela, and thank you for writing to us. Litsa and I have been volunteer moms for the past ten years working with children at the school in one form or another. You don't have to be a parent of an autistic child to feel concern and compassion for a social issue that's been around for some time. We haven't had anyone killed, thankfully, by a drunk driver in our immediate circle of family or friends but we are against drunk driving. Your last statement reads as though as authors all we're searching for is another hot topic to write about and then we can turn off our emotional faucet and move on to the next topic. This is far from the truth. First of all our book is only in the beginning stage, where we are gathering answers from our questionnaires to help us get a better picture surrounding concerns and areas that involve the everyday lives of parents and their autistic children. Without their input there is not much we can write about. Today I brought my little one and my sister and nephew to the Super Aqua Park and happened to meet someone I knew who had an autistic child. I had never met her two boys so was unsure as to which one was autistic. Both boys appeared to have tons of fun sliding down these huge water slides. They came out with smiles on their faces and then ran back up to go down again. My point to this? If I were only to observe this child in that setting I would not have the opportunity to find out the behind the scenes interaction and running around the parents have done to get their child to this stage, I would not find out the cost for therapies (funded and not funded by outside help) all information vital to give as accurate a percentage of parents in the same boat as possible-- What I would have only seen is a boy who was having the time of his life, the way it should be. This is what being a 'simple author' is all about--to get the facts straight before the book is penned. I hope I answered your question.

Who is this Lea Schizas? Oh, she is an author all right! She writes books about Young Adult Fantasy and Young Adult Paranormal Suspense. Yes, the words Fantasy and Suspense fit very well with the Autism Epidemic theme!!!!

So, now that we know how one of the authors is, lets take a look at her reply and maybe apply some "autistic epidemic" scrutiny to her words...

Here are the flaws in the reply. I can see them because I am autistic and such "crap" activate my brain's alarm sirens!

"Hi, Angela, and thank you for writing to us. Litsa and I have been volunteer moms for the past ten years working with children at the school in one form or another."

So, the fact that I have worked as a volunteer for some 15 plus years with deaf-blind adults and young adults gives me the expertese to go out and write a book about the "deaf-blind epidemic"??? What makes you think that as an outside observer of the behavior of autistic kids, you have any kind of idea what their Autistic Soul is saying?

"You don't have to be a parent of an autistic child to feel concern and compassion for a social issue that's been around for some time."

OH! Empathy!!! The idiotic neurotypicals think that by using empathy they know what the other thinks and feels! Sorry Ms. Schizas, but YES YOU DO NEED TO BE A PARENT OF AN AUTISTIC KID! Because a large number of these parents is themselves autistic and this means that these specific parents unlike other parents, do not only have to deal with their children's autism, but also their own. The fact that they have not been diagnosed because of the sooo limited knowledge that exists on autistic adults, does not mean that they do not have to STRUGGLE WITH A SOCIETY THAT IS NOT AUTISTIC!!!

This but another tragedy that many of these parents face. But you choose to ignore that fact and focus on children using these parents' struggle to generate sympathy and profits. What about focusing on the struggles of undiagnosed autistic parents dealing with their autistic kids and a non autistic society who instead of helping them as they need, is pushing them into putting their kids in therapies and interventions and all kinds of crap, sacrificing their kid's childhood and carefree youth, wasting it so that specialist can profit from autism.BECAUSE IN AUTISM THERE ARE THE MANY $$$$!!! LET’S NOT FORGET THAT!!!!

"We haven't had anyone killed, thankfully, by a drunk driver in our immediate circle of family or friends but we are against drunk driving."

What is this for an example? You compare someone drinking and driving to raising an autistic child? Who is the victim here? The parent or the CHILD??? And WHERE IS THE CRIME? I guess I know the answer to that one. It is being AUTISTIC that is the crime, the epidemic that is harming society...

"Your last statement reads as though as authors all we're searching for is another hot topic to write about and then we can turn off our emotional faucet and move on to the next topic. This is far from the truth. First of all our book is only in the beginning stage, where we are gathering answers from our questionnaires to help us get a better picture surrounding concerns and areas that involve the everyday lives of parents and their autistic children. Without their input there is not much we can write about."

Ms Schias and Ms Kamateros, to get a clear picture of the situation you need to first understand that these parents are also autistic, or they would not have had an autistic kid, and that this is another science's misconception that autistic kids just happen to be born to non autistic parents!

Then you need to go live 24/7 in a home of such a family to get the picture because form a questionnaire what you get is only one side: that of the parent's struggle and NOT the child's own struggle dealing with their autistic parent who think is not autistic and keeps rejecting (subconsciously) their autistic child thinking its abnormal!! A QUESTIONNAIRE DOES NOT EVEN SCRAPE THE SURFACE of what kind of interactions happen in such an autistic home. Believe me, I grew up in one such home!!!

"Today I brought my little one and my sister and nephew to the Super Aqua Park and happened to meet someone I knew who had an autistic child. I had never met her two boys so was unsure as to which one was autistic. Both boys appeared to have tons of fun sliding down these huge water slides. They came out with smiles on their faces and then ran back up to go down again. My point to this? If I were only to observe this child in that setting I would not have the opportunity to find out the behind the scenes interaction and running around the parents have done to get their child to this stage, I would not find out the cost for therapies (funded and not funded by outside help) all information vital to give as accurate a percentage of parents in the same boat as possible-- What I would have only seen is a boy who was having the time of his life, the way it should be. This is what being a 'simple author' is all about--to get the facts straight before the book is penned. I hope I answered your question."

This whole part is another clear, to me at least, point of how Ms Schias sees autism; as a sort of problem, a problem that deep down does not really exist. She remarks how "normal" the autistic kid looked as if her expectation was to see an abnormal kid's behavior... Ms Schias, AUTISTICS ARE NORMAL. The only reason neurotypicals can't see that its because there is something wrong with THEIR brain and its called GESTALT!!!

And what you also refuse to see and realize, like the rest of science, is that normal autistic kids grow up and adjust and mature and develop and change like any other human being. But in your ignorance about autism you expect them to be the same year after year and you do not study autistic adults so you can't have anything to compare them with. You see autism from one and only point of view: childhood. And from such a narrow point of view it looks as if being autistic is a being a "damaged" neurotypical! Yet, you never question YOUR narrow point of view, but rather the way the autistic kid's behavior looks and its so called limitations.

The narrow point of view that is based on the way Gestalt works in the neurotypical brain, which a few loose pieces and "puts them together" thinking that the picture it sees is the correct picture, thus you assume that autistic kids need early intervention, but have not taken into account that by early intervention you are robbing the autistic kids childhood, freedom, natural and normal way of development by assuming that being autistic is abnormal.

Maybe it is neurotypical kids that need early intervention. After all it is their brains that are SLOW! A research done in Washington DC showed that while autistic kids as young as 2 months could make any object they dropped spin over and over, NO neurotypical kid was able to do that!

Maybe these neurotipical slow brained kids need the early intervention, how about that for a change??? Send THEM from age 2 to treatments and interventions. But you would NOT do that! Neurotypicals do not need early intervention, but autistics do.

You know this whole thing about treatments and inetventions and therapies and all that crap, looks to me like making a good profit from selling soap to black people, promising it will take all "blackness" off of their skin and make nice white and clean!

Don't you understand what misconceptions and myths you are prolonging?

2 opmerkingen:

Lea Schizas - Author/Editor zei

I read your complete blog post and have learned from it. Although you go on a personal attack on me and my cowriter and twist some of our words around, I took away the importance of what you were saying - to have a chapter where autistic adults and children can have their own personal reflections chapter.

If you only really knew us and understood that our goal is to help squash many myths about autism out there then perhaps you wouldn't feel the need to twist and purposely call us names. The point I was trying to make about my visit to the Aqua Center was to show people that there is no need to use 'normal' or 'autistic' to differentiate a child from another.

We invite you to send us your story. The guidelines can be found in our website under PERSONAL REFLECTIONS.

Star zei

If you feel offended by my so-called personal attacks and my "purposely calling you names" then remember that it was not me who began this situation.

If I would have created a websire calling it "the Canadian edidemic" or even better the "The Author gone Autism expert Epidemic" or even better "The Ignorant Authors on Autism Epidemic" I wonder how would YOU feel and what would YOUR reactions be?

Until then since you declared "war" by calling my being autistic openly and epidemic, by calling your website and book title "The Autism Epidemic" then fighting back with any weapons I have is only fair and square!

If you are offended by my reaction then realize how offended I feel by your initiation of this EPIDEMIC label!

So, until you remove it, you are fair game as far as I am concerned. Remeber I am both a prey and preditor, a sheep and a lion! You attack me, I attack back. If you don't like it. Then stop attacking me. Change the very offensive name of your website and book! Best regards, Star