April 2, 2011

World Autism Awareness Day: Autism Exists, Let's Celebrate? Even Though It's Killing our Children?

My regular readers already know how I feel about Autism Awarness Day/Month. Everyone is aware already, how about actually doing something about it? No... instead let's just wear blue and do nothing. Except, of course, give money to Autism Speaks. Their party budget is getting low and Geri Dawson has horses to feed.*

Anne Dachel makes the case yet again this year:

I have a hard time each year with AUTISM AWARENESS DAY/MONTH. This is the Fourth Annual International Autism Awareness Day. How long are we going to pretend that all this autism is normal and acceptable? Seriously, how bad do the numbers have to get?

A number of stories out in the news calling for the public to "celebrate" the day. Today is World Autism Awareness Day by Kristina Chew "Today, April 2, is the fourth annual World Autism Awareness Day, during which 'autism organizations around the world celebrate the day with unique fundraising and awareness-raising events.' "

Pueblo Chieftain: Blue balloons raise autism awareness, "The baby blue balloons that Jonah and his classmates at Beulah Heights Elementary School released were to celebrate the beginning of National Autism Awareness Month. The event is celebrated each April, while the World Autism Awareness Day is today."

Sioux Falls Argus Leader: 5 questions: Shedding light on autism, "The falls will be colored blue by lights in support of the Autism Speaks' global Light It Up Blue campaign to celebrate World Autism Awareness Day and Autism Awareness Month."

Lufkin Daily News: Peavy students working to raise autism awareness, "Because of the prominence of the disorder in boys, blue is the official color for autism awareness and the reason the entire Peavy campus was encouraged to don the color Friday to celebrate Autism Awareness Month."

Berkshires.com: Diversity Takes Center Stage in the Berkshires, "'We have so many people supporting this committee right now,' said MaryLee Daniels, director of the Berkshire office of the Department of Developmental Services, and committee member.

"BFAIR, BCArc, the list goes on as to how many organizations support this initiative. We especially want people to join us in celebrating three different months of diversity. Of course, last month was Black History month. This month is Developmental Disabilities month and next month is Autism Awareness month. We have so much to celebrate here."

What is there to celebrate?

Lots of stories are about lighting things up in blue for autism awareness. Lots of them talk about autism being a developmental disorder affecting one percent of children whose cause is unknown. This is done without any alarm or demand for answers. We have been conditioned to accept autism as the perpetual mystery.

As the parent of a son in his 20’s with autism, I’ve had several decades of experts knowing nothing about this disorder. Is this to be the epidemic without a cause?

Looming in the background is the reality of what autism is doing to us. As I listen to the dire predictions about the hard economic times we're in and the need for austerity, I have to ask how in the world we're going to address the needs of the generation of children with autism about to descend on America as adults.

Dr. Thomas Insel is the wet blanket in all this celebration, acceptance, and awareness of autism.

He's the head of the Interagency Autism Coordinating Committee created by Congress to deal with with the disorder and he says that 80 percent of Americans with autism are under the age of 18. He's warned us we have to prepare for a million dependent adults "who may be in need of significant services." The IACC now calls autism "a national health emergency."

Maybe a better name for April 2 is World Autism Emergency Day.

Anne Dachel
Media editor: Age of Autism

Anne is right. And I gotta wonder, exactly how long this PR BS is going to continue.

And the biomed community isn't even being remotely polite about this any more. These are the two images that are being passed around on facebook today:

Last year I began a new blog. Lives Lost to Autism. I got more than a little bit sick of the blatant fear mongering of death by diseases that are NOT killing Americans, like measles, while the deaths of our children caused by their autism go unlamented and ignored by health authorities.

Last year 10 children died of Pertussis and the response was a national campaign to get people vaccinated (both adults and children), new state vaccine mandates are being pushed through, and the press on it has been everywhere. Last year at least 27 children and adults died as a direct result of autism, and unless you are in the autism community, or one of these deaths happened in your town, you probably never knew it. Even then, it is always an isolated incident, yes? (There were 41 reported deaths following the pertussis vaccine last year, but that is a whole other story.)

And those 27 autism deaths are only the ones who came across my google alerts for "autism deaths" or "autism died" or "autism drowning." The test I use on how to include them is basically, "would this have happened to this this person was neurotypical?" Who knows how many more went unreported or didn't get picked up by google. I would love to quote an actual statistic on how often autism kills, or how their incidence of premature death compares to the general population, but no public health agency cares enough to track this.

But insurance companies, whose bottom lines are effected by deaths and actually need to know if autism is deadly, won't sell life insurance policies on children with autism younger than 10, because it is not a good risk for them. See the problem there?

Our precious ones drowned, were murdered by caretakers and loved ones, were shot by police, suffocated while being restrained, were hit by cars, burned to death in fires, died from neglect and were killed by seizures. A few of them even killed others during their own melt downs.

Bryan Nevins, age 20, died because, on a hot day, he could not simply open the door of a van and get out. His institutional caretaker was on her cell phone and forgot about him for five hours. She is in jail now.

Autism kills and our government could not give less of a damn.

Autism Speaks doesn't seem to want to make that point that autism kills more than whooping cough, because then the public might actually begin to see this as a public health emergency and demand results... and then were would AS be? The party financing would dry up. Better for them to let autism linger and keep sucking up cash from suckers as they pretend to do something about it. Autism Speaks has found quite the cash cow.

(Speaking of... Guidestar finally posted AS's 2009 tax returns... they took in 45.5 million, and less than a quarter of it went to grants to do what the purported purpose of the org is, "Autism Speaks (AS) funds research into the causes, prevention, treatment and cure for autism. AS raises public awareness about autism and its effects on individuals, families, and society. AS aims to bring the autism community together to urge government and the provate sector to take action to address this urgent global health crisis." Of the whole list, "autism awareness" is the only thing that I think they actually have accomplished since their inception.)

And HHS's admissions that yes, vaccines CAN AND DO CAUSE AUTISM would mean that HHS has been able to do something about this FOR YEARS and has not done it. It means that those vaccine cases can be avoided by screening for mitochondrial disorders, autoimmunity and toxicity, and treated early on if doctors were actually taught that "vaccine induced encephalopathy" exists and if recognized and treated immediately that it may minimize or even prevent many cases of autism from developing.

And that might also mean that the people who have been sitting on this information for years, and decades, might suffer some consequences.

But AS has decided to ignore HHS's own claims of vaccine autism causation and openly declared that everyone should stop talking about the vaccine autism link.

Better that we just "wear blue" because dealing with all that ugliness would just be too ugly.

This is my post on "Autism Awareness" from 2008 entitled, "Insensitive Jerk Makes a Good Point". Nick sees all the signs that tell him that Autism is everywhere, but tells him nothing about what to do about it. And this was three years ago. I should try to track Nick down and see if he has figured out what he can do about it yet.


Make sure you wear blue, write a check to AS, vaccinate your baby, give him a dose of Tylenol, feed him GMO's and then go back to sleep. They experts are handling it for you.

Insensitive Jerk Makes a Good Point
By Ginger Taylor, Adventures In Autism
APRIL 13, 2008

Last week Nick Jameson, college smart ass, wrote a piece on his reaction to the autism awareness campaign currently under way. One currently struggling with autism might be put off by his callousness until one remembers that he is only 22 and that we were all pretty much insensitive smart asses at 22.

I would encourage all to allow Nick a chance to grow and check back with him in 10 years or so when he is expecting his first child and see if maturity has tempered his stance.

But what is useful from Nick, random college punk, is this reaction:

For example, what is the purpose of putting up a billboard that is telling me a child is born with autism every 20 minutes? What can I possibly do other than sit in my car and mutter to myself, “Well that sucks.” Maybe if there was a cure or even ways to help prevent autism, it might make more sense to have a billboard. Then it would reinforce concepts in people’s head that they could apply later like “only you could prevent forest fires” or “don’t eat cheese before noon.” But frankly, all this billboard is really saying is, “Beware, autistic people are everywhere,” and I’m sure that isn’t the message they want to get across. We already know autism exists; give us something we can work with. If the autism front wants to put us through a year of sappy ads and TV specials, than at least make it worth the time and money and headache. Teach us something. I was on my way to New York City this weekend and every toll booth was littered with autism propaganda. Did I learn anything? No. There are more intelligent ways to get out a message to the public.

Does Nick know that there are successful treatments available? Does Nick know that there are some kids who are completely recover from autism? Does Nick know that there are things that he can do to prevent his own children (should he ever become soft hearted enough for a woman to agree to marry and/or procreate with him) from slipping in to autism?

Apparently not. And that is the fault of the media who won't report the whole story.

So our young Nick has made a great point. One that parents like me have been trying to make for years now. "Autism Exists" is a message that everyone got a few years back now. But the important message, "Autism is Treatable and Preventable" is one that the media will not share with him.

What is it going to take for them to tell the whole story?

In ten years, when Nick is expecting, will he have heard this message from the media? Or, like us, will he hear it from another parent on the playground after Nick Jr. is diagnosed with autism?

Addendum: Autism Speaks had a huge chance this month to get the treatment message out and yet again, they are screwing children by with holding the important message. They certainly have the cash to do it.

/End 2008 article

*Ok... I actually have no idea if Geri Dawson has horses, but I do know she lives on a ranch or a farm or something, so horses... not out of the question really.


Max said...

Well said! I re-posted this on my blog post here: http://webberstory.blogspot.com/2011/04/lack-of-studies-awareness.html

Unknown said...

I think people read WAY too much into the Light up blue and awareness day. it is simply just that, bringing awareness and in order to get peoples attention, you celebrate it. Just like Breast Cancer. I embrace my daughers autism because right now, I have done all I can and am doing all I can and I refuse to point the finger at who caused it and who's fault it is. I would rather spend that time teaching and learning from my daughter. I understand your point, but I just don't understand why the Autism communities can't band together. It's really sad there are 2 sides even though in the end I really believe we all want the best for our kids...
I am celebrating today!!!!

RacersMommy said...

I think we in the community all need to stop fighting each other and fight together for our kids. Regardless of cause or cure or better therapy our kids need our help. There is no wrong or right here just the need to stand together and stop pointing fingers at each other.


Anonymous said...

I want nothing to do with the Autistic/Auitsm community because it is so bad and it is wearing me down and I'm also sick and tired of Light up blue and awareness day. Also, the ND and the Curebies communities are also wearing me down by fighting like cats and dogs and I also don’t want to spned my time and engery watching and reading their augurments and nether one of them have any interest of helping with people on the autism spectrum inculding myself but fighting and they don’t care and I don’t wont to be a part of both sides whatsoever. I am autistic and my life in not all about autism because life is more focus than autism.

Anonymous said...

Re: Smith5 - Breast Cancer Awareness month is about raising money to find a cure. Autism Awareness month is about making like more comfortable for those with autism. It'd be like is Breast Cancer Awareness was about helping women accept and celebrate their cancer, instead of stamping it out and keeping other women from going through the same kind of hell. "Oh, it's OK that you have breast cancer, because it's socially acceptable! Go you!"

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Anonymous said...

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Anonymous said...

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The Link:


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Anonymous said...

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Sorry for my grammar error.

nhokkanen said...

Minnesota has 14 measles cases, and public health officials are mobilized.

Minnesota has 15,000+ autism cases, and public health officials are paralyzed.

Except for the CDC PR squad, hurling smears and slurs at anyone who suggests that vaccine policymakers may be f**king up big time.

Unknown said...

Well said nhokkanen.

Jim Thompson said...

45.5 million dollars for what--32 million in salaries and overhead?

Unknown said...

Thanks so much for the article, keep writing. I too am tired of the yearly 'awareness', we don't have time. We know the causes and we know the biomedical interventions that can help'. Yes there is a 'right or wrong'. It's wrong to take the media coverage and financial resources and waste our time on ideas that have no credibility. It' right to push to have our chidren treated for the neurological and biological symtoms they suffer from. You said it wonderfully "we need treatment now! not awareness"

Jamie said...

I am 24 years-old, no kids yet. The message that autism is preventable and treatable has reached me, thanks to blogs like yours. I will do all I can to prevent my future kids from having chronic medical issues that so many kids seemed to be plagued with nowadays.

Thank you.

Unknown said...


HesyCat said...

I agree. I think everyone is aware of it. We need an autism action month.

Autism awareness day is the one day a year that people are cordial to you. The other 364 days they can avoid you like the plague. Yet they feel warm and fuzzy with themselves. Yeah. that blue lightbulb is really helping me. maybe once I finish chewing my fingernails off I will actually look at and notice it.