1 in 68. 2 of 2.

If you are an autism parent, I'm sure you saw the massive social media frenzy with yesterday's announcement from the CDC. Their new rates of autism are 1 in 68.

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Well, sort of.

The numbers were accurate 4 years ago.

If you were 8 years old.

And, if you lived in 1 of 11 test site areas.

The rest of us out there were not included in those numbers. Like my boys (who were too young). And like my entire State (which was not one of the test sites).

The whole thing makes me want to puke. Seriously.

I was in a craptastic mood because of the latest and greatest "news" from the CDC and was being fairly vocal about it online when one of my Facebook friends asked me why I was upset.

For SO MANY reasons!

As I told her, it's isn't just about the CDC "math". They obviously need a larger sample size for the analysis to be of any actual value. This 1 in 68 business is just fluff. We need the REAL, CURRENT numbers!

As you know, I have 2 boys diagnosed on the spectrum. Through my nonprofit work I know hundreds upon hundreds of affected children and families that are LOCAL in my area.

In fact, a mom I know said that a classroom in her school has an incidence rate of 1 in every 5 kids in one grade. 1 in 5! And, the next grade is about 1 in every 10 kids. 1 in 10! This is only 2 grades in 1 elementary school, and there are that many kids with autism.

Does this not shock anyone?

Or, shall I say, does this not shock anyone that doesn't already have a kid with autism?

It's safe for me to say that in our local area, the average across schools is approximately 1 kid with autism in every classroom, and likely there are even more than that. This is just my own observation based upon what I know about the area, but I can tell you that my half-assed estimate is far more realistic than the CDC's numbers.

Once again, things are swept under the rug and autism families continue to struggle. Middle class autism families are often in huge crisis all the time. They can't afford therapies because they are too poor (and our State still refuses to mandate autism coverage) and they don't qualify for help from the government because they're too rich. That's a freaking joke. Too rich. Most of these families are single-income because autism can be so all-consuming.

These kids slip through the cracks, they don't get the interventions and education they need, the parents are stressed to the max, some of those marriages fall apart, and the cycle of crisis continues on.

More kids get diagnosed every single day. I meet new families almost all the time. It keeps getting worse.

When will enough be enough?

When will the rate of autism be so shocking to the entire nation that sweeping change and action will be demanded? Does it have to get to 1 in every 5 kids? It may already be in some areas. Or, does it have to be a 100% incidence rate, like it already is with my boys?

Legal priorities in WA: Is this an April Fool's Day prank?

I'm having a nausea-inducing sense of deja vu right now, and I wonder if I'm somehow getting punked on April Fool's Day (a.k.a. the first day of Autism Awareness Month). Beware, because a rant is a' comin'...

Scheduled today in my state's capitol of Olympia, Washington, is a Senate Health Care Committee hearing to discuss an abortion mandate, known as the "Reproductive Parity Act."

This is the same exact type of Senate hearing that I testified at when I was working to enact "Autism Insurance Parity" in the State of Washington. Shayan's Law, as it was commonly known, never saw the light of day because it got shut down by the Health Care Committee every time it was presented.

We had a HUGE grassroots effort, and it was standing room only at our particular Senate hearing. Autism families and our various supporters joined together for rallies at the capitol. Hundreds of us were knocking on the doors of our legislators' offices, scheduling meetings with them, sending emails, and making phone calls to voice our opinion about the importance of autism insurance parity for Washington.

For what?

Nothing.

Autism doesn't matter enough to the law makers in Washington State to do anything about providing mandates for coverage like so many other states in our country have already done.

It appears now that abortions could be more important than autism.

Pardon me while I vomit.

The fight for autism continues. Small strides are being taken through the work of some dedicated attorneys and an organization that is working to sue every insurance company that operates in Washington State, until autism coverage is mandated for everyone. God bless them for continuing the carry the torch of autism for all of us!

And, they are winning!

People are starting to get coverage for necessary autism therapies in drips and drabs. Unfortunately, my family's insurance company has not entered the court room yet, but their day is coming. I only wish it would come faster!



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Until then, my kids will continue to be denied coverage, and we will continue to not get the therapies they need so much, all due to the fact that we are not wealthy enough to pay for it all out of our own pocket.

It is SO WRONG.

It saddens me to think that abortion mandates are more important than autism mandates. Our kids with autism need help. Families are suffering under the financial burden of autism. Children are not getting services that could help them in both the short and long-term. The people who could enact meaningful change that would better the lives of so many of our state's citizens choose not to.

This is not what I consider to be a good start to Autism Awareness Month.


(Please note: This is my opinion about the importance of one issue over another, and I am entitled to feel the way I feel. Negative comments that seek to engage me or any of my readers in a bitter political debate are not welcome.) 

Flashback Friday: Financial struggles of autism families

My hubby and I have been poring over our budget recently as we contemplate some things, and I remembered a post I wrote about how autism families earn less. Autism families really struggle with finances across the board, unless you're some sort of a famous bazillionaire.

Like so many of you out there, we are underwater in our mortgage. That is a scary feeling because on paper we have done everything right. We chose not to max out our home's equity and we are very careful with our credit and diligent with our budget.

Back when my hubby lost his job we had to slash and burn our budget just to survive. Let me tell you how hard it can be as a single income household to maintain supplements and a special diet while on unemployment! The sad thing is that when Titan found a new job about 6 months later, he had to take a monumental pay cut.

Financial stress just doesn't stop...especially in this economy. Pile on autism and it can be downright overwhelming.

My hope for you is that you live in a State that has enacted autism legislation in order to pay for therapies. My hope for you is that you are not going in the hole each month despite your best efforts. I hope to someday join you in those more pleasant realities.   

Check out the post I wrote last June and see how researchers have confirmed that our financial struggles are statistically significant.


P.S. Don't forget to enter the giveaway for Kate Winslet's new book, The Golden Hat. The contest ends soon! I'll announce the winner on Monday morning. Good luck!

Autism epidemic, continued

Last week I told you how I felt about the new autism numbers per the CDC. In case you missed it, the prevalence of autism is now 1 in 88. My post prompted a rather lengthy comment from Heidi that I felt needed further discussion. I reached out to my blogger friend, Cari from Bubble Gum on My Shoe (an awesome gal who has done guest posts for me before – here and here), to help me field the questions that Heidi posed. Without skipping a beat, she got right to it and added some great value to the discussion. Unfortunately, my mind doesn’t work that fast and I needed a bit more time. I want to continue on what Heidi and Cari started, and weigh in with my own thoughts, too.

Well, what I didn’t realize is how much I would have to say about this! My post got to be out of control and way too long for any sane person to read. In an effort to save you from reading for over an hour, I broke up some of it into a separate post on Monday to coincide with World Autism Awareness Day.

So, now I’ll bring you back to the original comment that spurred this on and begin the discussion. Get ready....here we go!

New autism prevalence numbers

Did you hear that the CDC is going to share their latest numbers on the prevalence of autism in the United States? The last time they released autism rates was in 2009, so an update is certainly due.

I read about this in an article from Disability Scoop, dated March 9, 2012. The snarky side of me wants to take bets on the day they will release the numbers, as well as what the actual numbers will be. Care to make a friendly wager?

Will the CDC release the new numbers in time for World Autism Awareness Day?
Or, will they mention it in some teeny byline on Tax Day (or some other newsworthy day), thereby diverting attention from the brand new statistic?

Will the CDC’s numbers show a significant increase, more closely mirroring the study done in South Korea that found an autism rate of 1 out of every 38 children?
I think it would be nearly impossible for the numbers to be “better” than they were. I keep hearing of new cases in my community almost every day and I have to believe that this is happening everywhere else, too.

What I really want to know is:
How high must the prevalence be in order to warrant a state of alarm across the United States?

When will people wake up to the epidemic of autism and see it for the burgeoning issue that it is?
Autism affects those with the diagnosis, their parents and families who care for them, the doctors who diagnose them, the professionals who treat them, the teachers who teach them, and the list goes on and on… 

When will every State enact legislative change in order to help this exploding population?
Here in Washington, we are still waiting for the right to not be subjected to medical insurance discrimination. Some day we will catch up with other States that have figured out that medically-relevant therapies are not only helpful, but necessary for those with autism.

Any parent of a child with autism can tell you that it is truly a life-changing experience to have a child diagnosed with autism. (In my case, more than one child!) Your life is different than you imagined it would be. It’s definitely not typical. It can be absolutely beautiful in unexpected ways, yet it remains a difficult journey for both you and your child. It really is a spectrum of experiences, with each one unique.

I’ll leave you with a quote that a Facebook friend of mine shared (which I immediately stole for my own profile after I read it!):

If 1 out of 91 children were being kidnapped, we’d have a national emergency.
We do. It’s called Autism.

When will the prevalence of autism become a national emergency?
I’m still waiting for that day… 

It just keeps gettin’ better and better!

**First, a disclaimer: What you are about to read is the whiny rant of a mom who is financially strapped, tired of fighting, stressed out, exhausted, and angry as hell. This post is not long, but it speaks to the struggle that thousands of families face both in my home state and across this nation. I know my situation is a walk in the park compared to others out there, but I just needed to vent. Thank you!**  

A couple of weeks ago I got a letter in the mail from our health insurance company in regard to an appeal for over 6 months of therapy charges that they denied. Their letter states:

“Based on a review of the submitted information in conjunction with the plan document language and healthcare policy, it has been determined that the charges…would not be medically eligible for benefits. Based on the documentation received, this child is autistic and there are no habilitative benefits under the medical plan.”

Welcome to insurance discrimination against autism, people. It runs rampant here in Washington.

As if it could not get any better, last night we got our new open enrollment packet for my husband’s work. The letter included stated:

“We must unfortunately raise the…plan rates this year…with an overall increase of 25%.”

We already pay close to $700 a month for medical and dental alone. With the new price increase, our cost is almost $800 a month, not including our other elections and deductions. I may have to sell a kidney here soon to pay for the benefits that my kids need (even though the dang insurance company refuses to pay on medically necessary claims).

So, instead of spinning my head around and spewing forth all of the venom I feel about our health insurance and financial situation, I thought it would be best if I just stopped writing now and simply posted a few more comics.

I removed a couple of letters on this pic. I think you get the idea!