World Autism Awareness Day 2012

Today is World Autism Awareness Day. Originally I was going to post a response to the comments from my post last Friday, “Autism epidemic, anyone?” That follow up post has taken on a life of its own. It’s gotten much bigger than I expected, and I’m still not done writing it. So, I thought I would take a portion of it and break it down a bit, and then I’ll post the rest of it in the next day or two.

Since today is a significant day in the autism community, I thought I should go along the awareness vein and share som very pertinent and timely information that I learned from a friend of mine, Marcella Piper-Terry. She is an independent researcher and has a firm grasp on statistics. She started crunching some numbers related to the autism prevalence and tried to bring those numbers into the present day (since the numbers the CDC released are OLD and out-of-date). See my last blog post for the full explanation of why the CDC’s numbers are old and not very relevant for us today.

What Marcella came up with was shocking. I have no way to verify her numbers, but I appreciate her taking the time to try to make some sense out of things for the rest of us. Regardless, her numbers have much more value to me than what the CDC presented last week.

There was a lot of shock surrounding the increase of autism to 1 in 88. Well, that may be so, but how shocked will you be when you know what the current number is? Keep in mind, Marcella could only go forward with the trends already established. The CDC does not use a population-based model. It is a scattered, incomplete pool of data. If we had more complete numbers that were more representative of the population, I know in my heart that even the numbers Marcella came up with are VERY conservative. The sheer enormity of that, my friends, is what we should be shocked by.

The following are her numbers and her words as she describes them: 

The CDC says the rate of autism is 1 in 88. That number is four years old and is calculated for children who were 8 years old in 2008. The number reflects a 78% increase over the 1 in 150 number that was from 2002 (announced in 2007). Dividing 78% (rate of increase) by 6 (number of years from 2002 to 2008) we get a yearly increase of 13%. This allows us to calculate (approximately) the true rate of autism for 8 year olds in 2012. Using the same 13% per year increase we can extrapolate out five years and figure the approximate true rate of autism for children who are now between 3 and 8 years of age. This photo album contains my chicken scratch notes as I performed these calculations.

Long numbers. I didn't round off anything because I wanted to be completely exact in my calculations. This started out to be just a little exploration, but soon became one of those "Oh, My God... I have to finish this" things. That's why it gets more organized toward the end.

I started with the 1 in 88 number, calculated for 8 year-olds in 2008. This equals 1.14%. The 78% increase over the 1 in 150 number (from 2002) is divided by six (number of years from 2002 to 2008) for an average yearly increase of 13%.

Calculating the yearly increase yields the following:
1 in 78 (2009)
1 in 69 (2010)
1 in 61 (2011)

These numbers are for 8 year-olds diagnosed with autism.
The current number for 8 year-old diagnosed with autism is estimated to be 1 in 54.

Current rates (2012) for children who are less than 8 years old:
1 in 48 for 7 year olds;
1 in 42 for 6 year olds;
1 in 37 for 5 year olds;
1 in 33 for 4 year olds;
1 in 29 for 3 year olds.in 29 for 3 year olds.

Are you scared yet?
Here is something else to think about...
The rate of increase used to calculate these statistics is based on CDC data gathered in 2008. That was before the 2009 H1N1 scare. These numbers are based on the real-world scenario BEFORE the push for the flu vaccine for pregnant women and infants beginning at six months of age. That means that even as ghastly as these numbers are, they are underestimates of the true magnitude of this crisis.

Extrapolating out for the next ten years:
2013 = 1 in 26;
2014 = 1 in 23;
2015 = 1 in 20;
2016 = 1 in 18;
2017 = 1 in 16;
2018 = 1 in 14;
2019 = 1 in 12;
2020 = 1 in 11;
2021 = 1 in 10;
2022 = 1 in 9.6;
2018 = 1 in 14;
2019 = 1 in 12;
2020 = 1 in 11;
2021 = 1 in 10;
2022 = 1 in 9.

I encourage you to look up my friend Marcella Piper-Terry on Facebook and visit her website. She is a force, and she is much more knowledgeable on topics related to autism than I am.

As part of launching Autism Awareness Month and recognizing that today is World Autism Awareness Day, I will share with you one of my favorite slogans about autism. In fact, I purchased a button with this saying and I wear it during the month of April.

April is Autism Awareness Month. Every day is Autism Awareness Day in our home.    

I support Autism Awareness, but I would like to think that we are becoming more aware of autism. The big question mark of “what do we do now that we’re aware of autism” makes me further endorse April as Autism Action Month. We need to act on behalf of our children. 

My friend Cari from Bubble Gum on My Shoe took it a step further and made a t-shirt that says:

My kid has autism. Yours is next.

She’s right. We cannot sit back and do nothing.

I encourage you to speak with your legislators about autism. Share your story. Find autism organizations that are making meaningful contributions to your community and support them. Connect with other autism parents online and locally through support groups. We are each other’s best resource. Let’s act together and try to create positive change for our kids.  

Diplomatic Warrior

Diplomatic warrior. Sounds strange, doesn’t it? Well, I think it’s a term that fits me. There was a time in my life when I was disparagingly dubbed a “diplomat.” In fact, being too diplomatic cost me an amazing opportunity while I was in college. Ultimately, that loss brought me to this very moment - fighting the good fight for my boys.

Our family’s journey with autism has caused me to become the warrior mom that I am today. I wear the badge proudly. I work hard to help my kids. If you get in my way, prepare to be steamrolled by one tough Mama Bear! My boys have made amazing strides, but it certainly hasn’t been easy. Nothing about it has been easy. But, they are recovering, and I can tell you that life is better now than it was even a year ago.

I’ve become a different person over the past few years. For instance, I never thought I would run a support group. Ever. But, I’m now in my third year of sharing and learning with a group of great parents. We all work and fight to help our children in the best way we can. A label doesn’t have to define your child’s experience. In fact, it can propel you forward to positive change.

While working with my group and a local nonprofit over the past few years, I learned that legitimate connection with people often trumps the need to always have the “right” answer. I can be strong-willed and opinionated. There are a few topics that I could easily do a lengthy verbal dissertation on. Some of my poor friends have heard me do just that! I don’t know how they can put up with me sometimes. We all have our hot-button issues, but we also learn how to pick our battles. Honey is better than vinegar, right?

There have been times that I’ve gained knowledge and perspective by simply shutting my mouth and listening to ideas that challenge my view. It doesn’t mean that I will always agree, but sometimes I can truly see the value in something that is exceedingly different from my own current thinking.

The autism community could use a good dose of diplomacy right about now. Facebook has lit up the past few days with issues that divide the various autism “parties.” I’ve also seen this kind of division and rhetoric in my own community. There are so many reasons to have a strong viewpoint when it comes to autism!

Do you think it’s safe to vaccinate, or are vaccinations contributing to the incidence of autism?

Do you believe in embracing neurodiversity, or do you choose to pursue biomedical treatments to help alleviate and improve medical symptoms related to autism?

Do you think Dr. Wakefield is a quack, or do you think he’s a doctor who has risked his entire career to help families with autism?

These and other topics are polarizing. Parents are tired from their daily autism battle. When you throw in strong dissent from the very thing you’ve cried and bled over, things can get messy. And, it can get very ugly, very fast.

As the saying goes, “Can we agree to disagree?”

When was the last time you had a discussion with a friend about religion or politics? Do you always have the same opinion as they do? Probably not. I think this easily carries over into the world of autism.

As far as I’m concerned, my role is pretty simple. I choose to share my experience so that others might have an easier journey with their child. You may disagree with my advice, opinion or methods, but that’s okay. And, I might disagree with you, too.

Autism is so prevalent and pervasive that it is literally kicking our collective backside right now! I’d rather fight beside you than against you. How about we all give each other a measure of respect, show some diplomacy, and battle on?