Guest Blog by Shelley E. Hendrix
In March 2016, the Centers for Disease Control and Prevention (CDC) released official new autism prevalence numbers. No one screamed. The press barely covered it. Everyone went to bed, and woke up the next morning for the first day of Autism Awareness Month.
Maybe it was because we have heard that number before. Maybe it was because we felt relief that everything was holding steady.
That’s good news after all, right? Stability for a rapidly rising diagnostic rate?
When you look closely though, really look at the scope of what this plateau means, you realize 1 in 68…isn’t great.
Maybe we are all ducking the epidemic.
That’s right. Each and every one of us. It happens when our families, self-advocates, the plethora of autism groups, political figures, scientists, clinicians and therapists focus on that simple ratio and not the bigger picture.
You can’t lose 25 pounds for summer by eating carrots sticks one afternoon. You can’t train for a marathon by going outside and sprinting to the end of the block.
You can’t turn the tide of the autism epidemic by taking action one time.
Change, real change, requires strategy, goals, measurement, accountability, and ongoing discipline.
So what does ducking 1 in 68 mean?
It means we are failing to fully address the autism epidemic. “But autism can’t be an epidemic,” you say, “because autism is not a contagious disease!”
The CDC defines obesity as an epidemic. The CDC defines diabetes as an epidemic, and even indicates an environmental trigger as a cause of Type 1 diabetes. Both receive a significantly higher percentage of research dollars than autism as a result of this epidemic designation.
Why has the CDC has not declared a disorder impacting over 1 million children in the United States under the age of 16 an epidemic?
When did this ducking happen?
Where were you on December 31, 1999 as the world rang the bells and a new century dawned hopeful for the future? Were you a little nervous that everything would stop moving because our computer systems wouldn’t make it over the hump?
Everyone breathed a little sigh of relief when the world did not end at the stroke of midnight. Technology not only survived, but also took off like a rocket.
So did autism.
Beginning January 1, 2000, the rate of diagnosis moved into the double digits as one in 88 children born that day would later develop autism. Two years later, that number jumped to one in every 68 children.
Since 2002, 176 children have been diagnosed with autism across the country each day. No weekends off—autism never takes a vacation, it just marches relentlessly forward.
Every year on December 31st since 2002, Americans look back over the year and few realize that 64,240 children were newly diagnosed.
This is 1,018,352 children diagnosed with autism since Y2K—at a minimum.
Minimum because slow counting means we won’t fully know the rates of diagnosis from 2005 through today until 2028.
Unless something is done to fix that.
So how big is this ducking thing getting?
Since Y2K, more children have received an autism diagnosis than all of the residents living in the city of San Jose, CA – the 10th largest city in the United States.
In fact, more children have been diagnosed than there are residents living in any one of these cities located around the United States alone:
San Francisco, CA
El Paso, TX
Oklahoma City, OK
Las Vegas, NV
More than twice the population living in Atlanta, GA, Kansas City, MO, Omaha, NE and Minneapolis, MN
Three times the population living in New Orleans.
If you add in parents, you quickly find that autism directly impacts as many people as individuals living in Chicago, the 3rd largest city in America.
That’s a lot of people. These are large American cities.
How is this ducking happening?
That’s another blog. We’re working on it.
How can you help?
Over the next few months, SafeMinds will be offer several initiatives where you and your family members can be actively involved and integral to the process of change. As a community, we need to take action on all of them, but we want you to act on the ones that really resonate with you! We will make it easy for you to participate because we know everyone is busy.
Take the first step by registering here and stay tuned! Ducks belong in bathtubs, pools, and lakes, not public policy.
Anyone who donates $20 or more will get their own SafeMinds Autism Epidemic Rubber Duck! Please click here to donate now. If you are interested in receiving more than one rubber duck, please call 202-789-9821.
About Shelley E. Hendrix:
Shelley E. Hendrix graduated with a Bachelors of Arts degree from Mount Holyoke College in South Hadley, MA in 1991 with a double major of political science and art history. She currently resides in Baton Rouge, LA with her two children, Liam and Mairin. Liam was diagnosed with autism age the age of two in 1998.
Shortly following Liam’s diagnosis, she co-founded Unlocking Autism in 1999 for the purpose of raising awareness about Autism Spectrum Disorders and the belief that autism is treatable and preventable. She serves as president of the organization.
For almost nine years, Shelly served as the national director for grassroots advocacy for Autism Speaks, educating and leading the grassroots community on federal legislation, securing over $3 billion in research funding, and passing over 90 state laws to improve health insurance coverage and services for those living with autism.
On April 6, 2000, Shelley testified before the United States Congress Government Reform Committee along with a panel of parents with regard to the impact that autism had on her family, as well as her belief that vaccines led to the development of autism in her son.
In addition to her work with Unlocking Autism, Shelley has served on an advisory panel with the United States Department of Defense Autism Spectrum Disorder Research Program for Congressionally Directed Medical Research Programs since the program’s inception in 2007. Shelley now runs Different Beat Consultants, LLC, based in Baton Rouge.