Opinion: Why I Despise Autism Awareness Month

Thoughtful opinion piece by Kim Stagliano has authored a novel and two books on parenting daughters with autism. She is managing editor of Age of Autism. Anyone else feel this way? 

Today, you’ll be seeing a lot of blue: World monuments will be cast in blue lights, your co-workers will be wearing blue clothes, and companies will be hawking blue products. Why? April 2 is World

Autism Awareness Day, when advocacy group Autism Speaks “celebrates” its international Light It Up Blue Campaign. But while you’ll be seeing blue everywhere, I’ll be seeing RED. The feel-good frippery of Light It Up Blue cloaks an often debilitating disorder in an air of festivity, with balloons, sparkling lights and pep rallies. The campaign implies autism is a party, rather than a crisis. For families living with autism, reality is far more sober, and their needs extend far beyond “awareness.”

Open Letter to Journalists on Eve of Autism Awareness Month

From Age of Autism's Media Editor Anne Dachel.

Dear Fellow Members of the Media: (That includes all of you at CBS, NBC, CNN, Forbes, New York Times, Chicago Trib, LA Times, et al.)

April is coming up and I wanted to say a few words about the month dedicated to autism awareness.  Many of us in the autism community are tired of stories about lighting the world up in blue and celebrating autism as if parents should be happy about a diagnosis.  We've endured years of feel-good coverage about awareness, fund-raising walks, and no explanation for the mystery of autism.  

Most of all, we want you to do your jobs. 

'Look at Me'

From Age of Autism Contributing Editor Cathy Jameson.

“Look at me!
Look at me!
Look at me NOW!
It is fun to have fun
But you have to know how.” –Cat in the Hat by Dr. Seuss

Ronan has loved his Dr. Seuss books for several years now. He really enjoys ‘The Cat in the Hat’ and ‘Green Eggs and Ham’. Flipping back and forth to his favorite pages, he hands us his books so we can read aloud to him. Since he loves the books so much, I’ve memorized several of the pages. To Ronan’s delight, I offer these silly sentences to him at random times of the day.  Ronan’s siblings do a really good job at keeping Ronan engaged too.  Big Sis adds silly sounds and acts out certain scenes. Little Buddy offers goofy expressions at the really funny pages while pointing to the words he’s reading. Ronan’s little sisters wait patiently to see the pictures while Ronan eagerly looks for his next favorite part of the story. Ronan’s been thumbing through, scanning and reading books for several years now. We have multiple copies and other Dr. Seuss media—board books, apps for the iPad, DVDs, flip books and have bookmarked favorite youtube videos. I love that while I read aloud, Ronan is able to fill in many of the words. It’s not verbal language yet, so he signs everything to me.  

Opinion: Autism Epidemic Paralyzes Doctors

From Anne Dachel is Media Editor for Age of Autism.

Doctors still don’t know how to diagnose autism.
The American Academy of Pediatrics and the Centers for Disease Control and Prevention have a very difficult role to play when it comes to what they do about the autism epidemic.  Both organizations have to appear concerned (since something affecting more than one percent of U.S. children is a little hard to ignore), yet not alarmed over autism.  In addition, they have to be making some efforts to find answers at the same time they’re clearly paralyzed by the ramifications of this growing health care nightmare.

The Amish All Over Again

From Dan Olmsted with the Age of Autism.

Back in the early days of USA Today 30 years ago, the paper’s founder, Al Neuharth, roamed the newsroom, micromanaging and demanding impossibly high standards. That was not necessarily a bad thing – the paper was his baby and he knew what he wanted – but it produced some classic moments. In one case, he rejected headline after headline on a particular story – as it was told to me, 24 times -- until the frustrated editor once again handed him the first headline that he had by now forgotten.
“Finally!” Neuharth exclaimed.
I’m about at that point when it comes to the Amish and their amazingly good health. There’s been story after story reporting the relative absence of Alzheimer’s, allergies, asthma – you know, the big chronic disorders that plague the people who live around them, namely the rest of us. Not to mention -- not ever -- the lack of autism.
Autism aside, the medical and media establishments still manage to evade the logical implications – something is protecting the overall health of this insular community whose rejection of many contemporary norms is legendary. You would think they would want to find out what that something is and try to clone it, stat, especially as the same disorders and diseases hit epidemic rates outside the Amish world and these same “experts” express complete bafflement about what’s going on.

Launch of Autism Media Channel

Interesting item from Dan Olmsted and friends at The Age of Autism.

Today, we are proud to announce the official launch of the Autism Media Channel (AMC): www.autismmediachannel.com. Our mission is to provide you, the autism community, with engaging, informative and timely content about autism spectrum disorders.

New York Ignores Students With Autism in 'Race to the Top'

Interesting item from the Age of Autism:

Several weeks ago New York received the good news that our state was one of the ten winners of federal "Race to the Top" education grants. More than $700 million federal dollars will be made available to our schools. It is doubtful, though, that any of that will be spent on special education, and especially not on student with autism. While New York schools are supposedly "racing to the top," the state Board of Regents recently voted to gut basic minimum standards of education for students with autism with the expressed goal of rolling back state educational standards to the minimums allowed under federal law. In other words for students with autism the goal is a "race to the bottom."
Describing their efforts to cut education for students with autism as "mandate relief" the New York Regents voted to do the following:
• Eliminate the minimum required amount of speech therapy specified for students with autism
• Eliminate maximum class sizes for students with autism
• Expand public school speech therapists’ work load to 65 sessions per week
• Eliminate the requirement that a student’s teacher have access to a copy of a student’s individual education plan (IEP)

CDC Study Expected to Show Autism Rate at 1 in 100

With the latest autism rate figures due out tomorrow from the Autism and Developmental Disabilities Monitoring Network and the Centers for Disease Control, thought this piece from Age of Autism would be of interest. Like to hear your thoughts.

ATLANTA - Researchers report that autism has risen to an epidemic rate of 1 in 100 children in a study to be released on Friday by the Autism and Developmental Disabilities Monitoring (ADDM) Network office of the Centers for Disease Control (CDC). This rate represents a 50% increase between the two birth cohort years of 1994 and 1996 and mirrors a recent study released by the Health Resources and Services Administration (HRSA), which found a rate of 1 in 91 children, 1 in 58 boys.
In 2007, the ADDM released a similar study conducted in 2002 examining children born in 1994 that found the autism rate to be 1 in 150. In the study to be released Friday, the CDC looked at children born in 1996 (8 years old in 2004) and determined that there was a substantial increase of 50% between those two birth years.
This study and other recently published research clearly indicate that autism cannot solely be caused by genetic differences because it is impossible for genetic diseases to increase at such astronomical rates. It also cannot be explained by better diagnosing, changes in diagnostic criteria or migration patterns. It is clearly triggered by the environment. It’s well past time that CDC and NIH treat the autism epidemic with the national emergency status it deserves and act with crisis level response.