Thursday, March 27, 2014

THE Numbers

You know what I'm talking about, it's what everyone in my world is talking about. Today the CDC released the new Autism rate numbers at 1:00pm. Everyone waited next to the computer to put it on their site and get the numbers out as fast as possible. I didn't, I was at lunch with a friend.

The new official rate of Autism is 1:68 (boys 1:42; girls 1:189). How about a pretty graphic?

You might have caught my tone here, not too much excitement. I'm not jumping up and down yelling, had the numbers gone up or down my reaction would be the same. The reason for that is because I'm frustrated. Tonight Autism will be all over the news media, articles will be printed, blogs will be written, news anchors will say "wow" and I will sit here and say AND.........

When my oldest son was born (2001) the rate was 1:250

The day he was diagnosed (2004) and the day my younger son was born it was 1:166

The day my younger son was diagnosed (2007) it was 1:150

When I started this blog (2011) it was 1:88

In the past I would anticipate the numbers, I would sit next to the computer and await the report. I would think that they meant something. Once we broke 100, once the rate got to 1:88 I thought to myself SOMEONE will notice! SOMEONE will do something!! Doctors, researchers, the CDC, the FDA, the EPA, Congress, someone would recognize that this is an issue. Wait? An issue? This is more than an issue. 

No doubt I am biased, I'm extremely biased. I can't separate Autism from my life any more than I can separate female from my gender.  I would love to say that life is so much easier since our first diagnosis but guess what? It's not

I still can't find specialists in my town (population 66,000).

Insurance still doesn't cover even half of the services my boys need. 

There is still no program in our school system that can adequately educate the high functioning special needs diploma seeking population.

The state waivers still have waiting lists thousands long. Not that it really matters though because once you have the waiver in my state you can't find any providers who accept the waiver as payment. 

We still get stared at in public and I still get unsolicited advice from people who think they know best. 

Families are struggling. Spouses are divorcing. Parents live in fear of the future. Kids are lost. 

To be perfectly honest, I don't care if the numbers are increasing because of better diagnostics or if its because there is too much of something in the air or our food or if it's because there were more cloudy days than sunny days 10 years ago... I don't care what the "experts" say that benefits their pet projects what I want is for them to freaking talk to one another and figure it out and get these numbers under control. 

I hope that someday, someone will soon realize that there is a population of kids and adults that have Autism NOW and tomorrow there will be more. This is a population large enough to make a difference and impact the future and what they need NOW is: 
  • education 
  • medical support 
  • psychological support 
  • therapeutic support
  • a future 
These kids are AMAZING. They are talented, they are smart, they are beautiful and they are a large part of the human population (and growing). To neglect their needs now is to ignore the future. If we as a country fail to educate them now, we as a country will have to support them later. Autism doesn't just go away at the age of 21, dedicated parents don't live forever and as much as I want and need to save for my boys future, I'm too busy paying for the therapies they need in the hope that one day they will be able to partially support themselves even if they can't live by themselves. 

So, as much as I want to think that these numbers will shock everyone and something will happen from it I know that tomorrow is a new news cycle day and something else will be the headline. 1:250 wasn't high enough... 1:166 wasn't high enough... 1:88 wasn't high enough... will 1:68 be? 

1 comment:

  1. Meet the new numbers, same as the old numbers. Until big pharma creates a side-effect ridden "Wonder Drug" that can be sold at a 25000% markup to the masses, the trend will continue. 'murica.