Wednesday, March 20, 2013

New Numbers

Last night, I logged onto Facebook and found that the CDC would be releasing new autism numbers this morning. My outrage, despair and helplessness has been almost paralyzing. I have been working on a blog post this week regarding yeast and Candida. Instead, I must face this issue before it consumes me.

Our newest number is now 1 in 50 school aged children with an autism spectrum diagnosis. At this exact time last year, we were just given the 1 in 88 number. The year before that, they gave us 1 in 150. They are changing so fast, its getting hard to keep up. The first thing that came to me was complete outrage. I am still shaking with unvented rage. 2% of our population under the age of 18 is suffering from autism and NO ONE SEEMS TO THINK THIS IS AN EMERGENCY. I'm absolutely sick with anger at the complete and utter lack of concern from the people telling us these numbers. "Nothing to see here, folks! Just know the signs and make your April donation to Autism Speaks!" Lightbulb!! April is Autism Speaks Month (Autism Awareness Month). They dropped the 1 in 88 numbers right before April last year, too. Good timing for lining their pockets, isn't it? You can rest assured that your $5 donation will go directly into someone's paycheck or into a fund for studying genetic links to autism. Yay!

Now, where did the numbers come from? How were they compiled? The 1 in 88 number came from a study done in 2008 on 8 year olds in only 14 states. I'd say that is not an accurate representation of the entire country, wouldn't you? These current numbers were compiled from a survey done over the phone with 95,000 parents. Hmm. Probably not the most accurate representation again. So, what are the REAL numbers?! Some believe it's closer to 1 in 29. In some states, that IS the number. At what point do we start, you know, giving a shit?

Autism is real. Autism is medical. Autism is treatable. Autism is not 100% genetic. Autism is preventable for many.  For some reason not a single one of these statements is recognized by our pharma or governmental officials. Why not? Why are our children being pushed into the spotlight for fundraising campaigns and news updates on the growing need for special education services but when we ask the questions of  "why" and "how," they are pushed back into that dark corner and labelled as medical mysteries? They are here, they need help but we aren't going to truly do anything beyond "awareness." What gives, guys? Oh yeah. The truth is scary and forbidden. The billions of dollars to be lost, the complete crumbling of public trust and compliance. I guess their livelihoods and peacekeeping would be at stake.

If these numbers were applied to anything else, can you imagine the pure panic? Imagine if 1 in 50 children right now had the flu, measles, chickenpox, etc. All temporary diseases that are treatable with low chance for long term effects. But here we are with 1 in 50 children suffering with bowel issues, inflammation on the brain, speech problems, OCD, anxiety, seizures, frustration and on and on and on. Real pain, real suffering, real lives halted or stopped completely. 

Now, I have to share an experience I had with someone a few days ago. A friend of a friend and I got into it on FB a little over the "over diagnosing" of autism and ADHD. There seems to be this stereotype of us from outsiders that we are lazy parents who look for the easy way out by getting a diagnosis of autism or ADHD. Ok. Let me tell you something. This is exactly what I told her:

 I am getting quite tired of seeing the assumption of outsiders generalizing all of us as "taking the easy way out" by getting our kids these "overused" diagnosis'. You think we are finding these doctors who just hand them out willy-nilly without evaluations and testing? Nope! Pediatricians and school specialists cannot diagnose these disorders. You have to get on a long waiting list with a specialist and go through several evaluations (most insurance companies don't cover) and essentially pay out a few thousand bucks. Then if you get a dx, you go through this giant list of therapy and treatment options, again, insurance doesn't cover ANY of. So you realize, damn, you aren't going to be able to afford these therapies and just pray your local school district can give as much support and resources as possible to help your child. Then you realize how much diet plays a roll in treatment and find yourself dropping $200 a WEEK in organic, gluten free foods not to mention the hundreds of dollars in supplements to help regulate their bowels and inflammation. And this does not even skim the matter of biomed treatment options. Yeah, easy way out.

I have met hundreds and thousands of parents here on FB who are in this world. They are all the most hardworking, educated, passionate people I've ever met in my life. They not only take on their personal battles with it, but they put in hours and hours and hours into fighting the government, medical facilities, insurance companies, pharma, etc for the future generation. They are real warriors and they suffer daily from the stress and heartbreak of their stories and the stories of people who support them. I don't know how most of them get the strength to wake up in the mornings and face the same day on constant repeat. They are the hardest working moms I've ever seen and it repulses me to see them labeled as "lazy, ignorant moms with no clue." They are far, far beyond that.

If you are a person reading this without an autistic child, without a vaccine injured child, or without children at all, thank you. You are taking time to read and support a growing population of struggling families. If you think this epidemic doesn't concern you and hasn't touched you, you are so wrong. This effects every single American. The long-term financial repercussions of autism and the ever growing numbers will devastate our economy and our healthcare system. 1 in 50 children will be 1 in 50 adults sooner than you think. And by then, the numbers for the children could be 1 in 20, 1 in 10? Who is going to take care of them? With what money and what resources?

We NEED you. We have made a whole hell of a lot of noise in just our little community, but they can barely hear us. We need unity. We need each and every American on board to raise some hell and demand some answers and action to fight this epidemic. It is not just our children who are being left behind and lost, we all are. Please. Whether you have a child on the spectrum or not, spread the word. Demand some attention and action from our leaders. Our children cannot wait. Where is the outrage?


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