I should be happy about it, right? After all, it's awareness for our kids. The 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 number 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:
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.
It is absurd that the only thing Autism Speaks can latch on to is "awareness." It's one of the very few things they successfully promote. 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 a 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. Let's show the number 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. I will be mourning the precious lives of the children who passed away due to wandering. I will be mourning the precious babies that regressed into autism, but that were born perfectly normal (like my 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. I want AS to put funding towards 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 speak to parents about nutrition, therapies, doctors based on 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:
I am hopeful Autism Speaks changes one day and goes back to its roots and original goals: an organization that was founded by the Wrights for their grandchild. Until then friends, speak up for yourselves!
