Friday, March 23, 2012

Light it up BLACK

It is exasperating to know that in just a week or so the media will start spinning and spouting endless tales about AUTISM. Talk shows, the news and social media will be fired up showing mostly "junk" reporting. Reports that have been passed down but not thoroughly researched. Blaming everything but the environment, vaccines, pesticides and all the contaminated crappy food we eat. Shows and reports on little Amanda who has autism but gosh, have you seen how pretty she paints? Or Bobby who is just so bright but who cares if he's 24 and has never told his mother he loves her because, oh yeah, he can't.

I should be happy about it right? After all, it's awareness for our kids. Truth is, I am sick and tired of awareness. I want action. I want meaningful research. I want the truth to be reported. It's not too much to ask. With the amount of kids receiving a diagnosis on a daily basis surpassing that of pediatric cancer, aids and  diabetes alone you would think the urgency would be palpable. It's not.

Autism Speaks (in yet another useless move that leads us nowhere) asking everyone to LIGHT IT UP BLUE to CELEBRATE simply makes my blood boil. These structures will be participating (thanks to Age of Autism for the listing):  

CN Tower Toronto CA
Bahrain World Trade Center, Manama,
Al Faisaliyah Center, Riyadh, Saudi Arabia,
Cairo Tower, Cairo, Egypt
Palacio de Bellas Artes, Mexico City
Big Brothers Big Sisters Building Grand Center, St
Paris Stock Exchange, France.
Al Anoud Tower , Riyadh, Saudi Arabia
Terminal Tower, Cleveland OH
Kingdom Tower, Riyadh, Saudi Arabia
Empire State Building, NY
Christ the Redeemer, Brazil
Great Buddha at Hyogo, Kobe, Japan
Rockefeller Center and Top of the Rock Observation Deck™, NY
Sydney Opera House, Australia
Niagara Falls, Ontario, Canada
Canton Tower, Guangzhou, China
Kobe Port Tower, Japan
Hungarian Parliament Building, Budapest, Hungary
New York Stock Exchange, NY

Now imagine for a second that all of the money it took to coordinate this and all of the money it will take to get these structures to light up and stay lit was instead put towards meaningful research or to pay kids therapy and treatment. Now THAT is something to talk about. In case you were wondering about AS's funds, here's a little teaser as to where it's mostly spent. It's a little old and some of those figures (probably higher now) and names have changed but you get the idea:

It is absurd that the only thing Autism Speaks can latch on to is "awareness". It's one of the very few things they are successful with. How is a company so powerful dropping the ball with all the millions they have to work with? We are aware. What happens now? Annoyed by the parents complaining about research? 
Then do some meaningful ones and shut us up. 

I want to make it clear that I do not resent those thousands of parents and even local parents and friends who dedicate their time to AS. I get it. I know many of you. You are trying to do something meaningful. You feel at loss with autism and feel this is the best way to give it all you have and make a difference.  I was there. Gasp! Yes, even I participated and once upon a time even raised money for AS. Luckily I was enlightened as to how little of our money ends up where it's supposed to. I am sick to my stomach that I ever did.

There was a study done that showed that "Mothers of Children with Autism have higher parental stress, psychological distress". It was CO AUTHORED by Geraldine Dawson who is now the chief science officer of Autism Speaks. Well, no shit. Yes, I am stressed damn it! you are spending our money to prove something we already know? Lighting it up blue amongst campaigns showing children with autism who are happy and smiling will not do anything. How about putting the photo of a 15 year old in diapers? That's realistic. Or perhaps showing that kid who is a math genius but can't feed himself ,comb his hair or even wipe his behind. Lovely isn't it? Let's have them be the poster kids. Lets show the amount of kids who were abused this year by teachers because they can't defend themselves. Let's add the stories of restraint and seclusion. Spare me the bullshit and get real.

No, I will not light it up blue. I will light it up BLACK (as suggested by Anne Dachel of Age of Autism). I will be mourning the precious lives of the children who passed away due to wandering or vaccine injury. I will be mourning the precious babies that regressed into autism but that were born perfectly normal (like my own son). I will keep screaming at the top of my lungs that enough is not being done to fight this. 

I want Autism Speaks to stop hiring or consulting with Big Pharma ties as part of their routine. Vaccine patent holders and pharma executives have NO business being on their board. I want AS to put funding towards vaccine safety research, immunology, toxicology, gastrointestinal, and regression.

On my part, I will talk to as many parents as I can reach. I will tell my story until I am "blue" in the face. I will caution parents about too many vaccines too soon, about nutrition, therapies, doctors and all of my experiences in the hopes that other children can perhaps either escape autism or get a huge head start once diagnosed.

For those that have asked about REAL ways to support our fight against autism, my suggestions are as follow:

To donate:

You can also call up a school or therapy center in your area and ask how you can help. It can be as easy as paper towels or perhaps crayons! Maybe you can donate towards something bigger but at least you know your money is going straight to the source: our kids!

I am hopeful Autism Speaks changes one day and goes back to it's roots and original goals. An organization that was founded by the Wright's for their grandchild. You know, the one who gets the same biomedical treatment they shy away from talking about.  Until then friends, speak up for yourselves and don't let Autism Speaks speak for you!

This post was inspired by Anne Dachel's post at Age of Autism. 
Read it here


GFCF Mommy said...

Great post, B! I read that stupid research report about our incomes being lower than the average and thought it was the most ridiculous thing I ever heard of. We need a study to tell us that? And anyway, who cares?

My son is the one who is a genius at science (not math) but who still can't put his shirt on correctly, it is always backwards, and just learned how to wipe himself without help, at age 9.

You go girl!

Kelly said...

Amen, Amen, Amen! Thank you for this post!

James said...

Hi – Will you please post a link to your important Blog at The Autism Community at Our members will really appreciate it.
Members include: Those living with Autism, parents of children with autism, their families, friends, support groups, etc.
It's easy to do, just cut and paste the link and it automatically links back to your website. You can also add Articles, News, Photos, and Videos if you like.
Email me if you need any help or would like me to do it for you. I hope you consider sharing with us.
Please feel free to share as often and as much as you like.
The Autism Community:
James Kaufman, Editor

Peggy said...

Autism Speaks is not the only Autism Organization out there. While I do agree with your comments about THIS organization, I volunteer with the Autism Society of America, which is very different from Autism Speaks, yet gets very little recognition for the work they do, because all focus seems to be on Autism Speaks.

While Autism Speaks fundraises, has fancy offices, and very little of the funds raised actually goes to resources and therapy, etc, almost ALL of ASO's funds raised DO.

B said...

Agreed! I love our local ASA.