Unity In The Community...

"United we stand, divided we fall.  Let us not split into factions which must destroy that union upon which our existence hangs..."  Patrick Henry

Now that April is over, I am doing my annual "BIG EXHALE" and reflecting on how I am feeling about autism this year.  It occurred to me this week that I am sort of like a "veteran" now in this whole autism thing. Not because my son is almost nine years old and has been on this journey for seven years.  If we are breaking down time, I spent at least the first three years in a state of numb disbelief, getting through the todays by not thinking about the tomorrows and smoking many packs of cigarettes.  When I did eventually shake it off and put on my big girl pants (which were literally quite big as I was also consuming many cookies with those cigarettes), I focused mainly on my boy - what went on between the walls of our home, and at his school.  I had a hard time reading materials on autism - even the inspirational stuff.  ESPECIALLY the inspirational stuff.  It just pissed me off.  Even though the panties were on, the brain was still lingering over there in the "poor, pitiful me" section of the arena.

I guess it was really just about two years ago that I started to read.  And then I went to town.  I read it all - anything I could find.  I started to realize the true enormity of what is going on here.  I figured out that my Luke is only but a blip on the autism radar.

The result of that research is that at this time, I feel confident and comfortable making the following statement about my child's autism and what I believe to be the cause/reason/why/story of what the hell is going on around here:

I believe that my son's autism is a result of toxic overload, including, but not limited to toxins resulting from the environment, the air we breathe, the products we clean with, the food we eat, the vaccines we inject, the medicines we take, the carpets we walk on, the water we drink.  I believe that it is a man-made affliction, and not a random genetic quirk.  I believe this as a result of research, and not because it's what I WANT or NEED to be true.  

One very important thing I want you to notice in the statement above:

It says MY SON'S autism.  It says this because I do not for one second believe that all of these kids have the same thing.

My belief is that this "spectrum" word that gets thrown around is actually an all-encompassing toxic tundra of illness - autism, ADHD, asthma, allergies, autoimmune diseases...and taking it a step further, I also believe that a large number of cancers are also taking up some space with us here as well.

Yup - I said that.  I don't think they all have the same thing.  I don't mean that they are all "different" or "fall on different parts of the spectrum"...I mean that they should be diagnosed with different things.

See, according to the "professionals", autism is not a medical thing.  Again, those that know me may not realize this because I have called it medical for years now.  But the party line according to "the powers that be" is that autism is a neurological disorder.  This means that any and all bizarre medical side effects are considered to be just that - EFFECTS of the neurological disorder.  Starts with the brain.  Go see a neurologist.  Blood work doesn't matter.  Diet?  We don't need no stinking diets!

But there is much evidence to the contrary.  Evidence that says that it starts with the body, or more specifically, the gut.  And that a damaged gut can lead to a MYRIAD of physical problems, as well as altered neurological behaviors, many of which resemble the typical actions and mannerisms of autism.

What if it's BOTH?  What is there is a condition that we will (for the sake of this discussion) call "typical autism" - a neurological condition with minimal physical side effects, multiple social and communication challenges, sensory issues, etc.  BUT - what if there is ANOTHER condition (hmmmm...let's call it "toxic autism" - again, for the sake of the discussion) - and THIS version starts with the gut - an intestinal system ravaged by toxins in all forms, not able to successfully process the overload...leading to a myriad of physical and neurological effects.

I am not crazy.  This makes sense.  Think about the autism community.

There is a large segment of the autism community that do not want a cure.  In fact, they are horribly offended that one would even refer to autism as a problem to be fixed rather than just a part of who they are. They rally against Autism Speaks and similar groups, with signs reading "You don't SPEAK for us!"

And I get it.  I really do.  I respect that you are an individual, aware of your own challenges, working hard every day to find your place in this world.  I respect your right to live your life and treat your autism as merely an identifiable piece of who you are.  In fact, I applaud you for that.  And you deserve all of the programs, devices, systems and supports available to aid you in fulfilling your potential as a high-functioning individual on the spectrum.

BUT - and stay with me here - that is not my son's life.  My son's life is limited. And difficult.  We do not use the word "blessing" when we speak of autism in our home.  He is non-verbal. He wears diapers. He spends his days running, jumping, stimming...we spend our days watching, corralling, protecting...he will most likely need to be taken care of for the rest of his life. And you want me to just accept that? Not on your life.  

Does he smile? Yes. Does he like to be tickled? Oh yeah. Do I believe he has feelings for us? With all of my heart. Do I value him as a human being and consider myself blessed that he was born? Absolutely.  Do I love him?  With every inch of my heart and soul.

But do I think that his autism is just a challenging little piece of him that we should learn to embrace?

NO. JUST NO.

Why have we not entertained the notion that this spectrum is not really what we think it is?  That all of the various degrees of "autism" may not BE the same thing?  Since "no one knows" why autism is happening in the increased numbers that it is, should we not consider the fact that we have it all wrong?

Think about it - what if the rightfully proud, socially-challenged, high-functioning ASD or Aspie kid does not have the same thing as my child, or the millions of children like him?  It stands to reason that this "group" would require a completely different set of services than someone like my son, don't you think?  And yet here we all are, fighting against each other over what we should be fighting for instead of considering the notion that we may just have it all wrong.

The ridiculous in-fighting within our own community is only serving to delay progress for all of us.  We can't even agree on the basic premise of exactly what it is we all need or want, and this may not even be our own fault.  This needs to change if we ever expect progress of any kind.

In the interest of the greater good, I will continue to support any and all groups, factions, theories, programs and what have you when it comes to autism - because until we know with absolute 100% certainty what the HELL is going on here, NO ONE has the right to discount any part of this discussion.  If that offends the high-functioning segment of our community, that's just too damn bad.  Autism is not just yours.  You do not get to determine what it is and what it isn't just because you have your own voice.  You can decide not to support a specific group if you like, but maybe instead of creating a split within ourselves we can all wake up and realize that it's not low-functioning against high-functioning - it's autism against the world.

We stand together - or we fall apart.  

1 in 68...Are Still Waiting...

WARNING:  Mama is not happy today.  Sarcasm and anger to follow...I am far past the point of gratuitous sugar-coating when it comes to all things autism people...deal with it.

Today the CDC released the latest statistics on autism prevalence in our country.

1 in 68.  ONE out of every SIXTY EIGHT children in this country has an Autism Spectrum Disorder (ASD). This is a 30% increase over the previous statistic of 1 in 88.  Oh, you remember 1 in 88...you know, the report from TWO YEARS AGO.  Yup, you read that right - 30% increase in just two years. 1 in 88 is just SO yesterday!

Here's something you may not be aware of - this study is done every two years on a sampling of children that are eight years old.  Though it is currently the year 2014, this is the 2010 statistic (four years to tally the numbers I guess?) This means that the 1 in 68 statistic applies to children that were born in the year 2002. Twelve years ago.  My son, and all of my other autism mama friends' kids were not even born yet.  Gee, I wonder what the number will be for Luke's year? At this rate, it will be 1 out of 2 for the year my daughter was born! I'm not really joking.

New Jersey is one of the 11 states used in the national analysis.  Ready for this one?

1 in 45 children in New Jersey has an ASD.  1 in 21 boys.

ONE OUT OF EVERY TWENTY ONE BOYS BORN IN THE STATE OF NEW JERSEY IN THE YEAR 2002 IS ON THE AUTISM SPECTRUM.

Yes, I am aware that caps signify yelling.  I AM YELLING PEOPLE.

For those of you that are not grasping the reality of these numbers (or if you just suck at math), let me throw a little comparison out there for you...there are more children with an ASD than are affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome – combined.

COMBINED. As in, all of them together.  The fact that each of these INDIVIDUALLY receives more government funding than autism does is a topic for another (angrier, sarcasmier) blog post.  But here's a little visual on that interesting situation from a few years ago taken from our good friends over at TACA (Talk About Curing Autism)...

And yet, the CDC continues to downplay the statistics.  They refuse to label this as an EPIDEMIC, or give it the national attention it deserves as a PRIORITY to be investigated and FIXED.  Did you know that they gave trampoline injuries a status of "epidemic" based on 1,200 children getting hurt in 1996? Hmmmm...now let's think about that.  Who suffers when a child is hurt on a trampoline? No, BESIDES the child silly!  They don't give a rat's ass about Timmy's busted arm! But you know who DOES pay? Literally?  Home insurance companies.  What? You didn't know that? Oh yes, home insurance companies can deny you coverage if you have a trampoline in your backyard.  I am going to venture a guess that the "epidemic" label helped the insurance companies push that sucker right on through.

You know who else can't be sued? Vaccine manufacturers.  What do I mean?  Well, it's really quite simple. In 1986, the Vaccine Protection Act was passed - hey, that sounds like it would be protecting us from vaccines? What's wrong with that?  Jump back sister...the only thing this act is protecting is the MANUFACTURERS of the vaccines. As of 1986, these "big pharma" hotshots could make anything to be jammed into our kids, and were given indemnification from legal action in any case of a negative reaction, whether it was a rash or death.  And then THIS happened...

Insurance companies...Big Pharma...wait a minute...this sounds like it has something to do with MONEY? Nah, that CAN'T be true!  

My son was diagnosed in the year 2007.  In one of the more twisted ironies of my life, that anniversary falls right around the same time as WORLD AUTISM AWARENESS DAY! (I could not possibly be more aware...trust me).  In the past seven years, I have heard TONS about what does NOT cause autism.  It's NOT the vaccines, it's NOT the environment, it's NOT medications, it's NOT the air in New Jersey (1 in 21 = 3 times the national average...hmmmmm), it's NOT GMOs or PRESERVATIVES in our food...

Can we please STOP talking about what is NOT causing it - and START figuring out what IS causing it?

Check the air, check the food, check the cleaning products, check the water, check the medicines, and YES - CHECK THE VACCINES - check them all - completely and thoroughly and figure out what the hell is going on before we lose another generation of children.  Enough is enough.

I want to finish this post by saying something that I don't normally say.  I don't feel the need to scare people - I have always gone by the assumption that parenting is an individual and personal journey for everyone, and unless someone ASKS me for an opinion on this stuff, I keep the gloom and doom to myself.  Well, I have changed my mind.  I am publicly stating that ALL NEW PARENTS or PARENTS-TO-BE need to be aware that this is happening.  It is scary.  But it is on you to be aware, to do the research, to trust doctors, but to QUESTION them when your gut is telling you to.  To read food labels. To limit your child's intake of acetaminophen, antibiotics or other medications when they are not truly necessary.  Take whatever precautions you can in your home to create a "clean" environment...because they DO NOT KNOW WHY THIS IS HAPPENING.  It could be all of that, it could be none of that, it could be a bizarre combination of several of these things...BUT WE DON'T KNOW.

This is not just a problem for families touched by autism.  This is everyone's problem.  Those that know my son may think that they are off the hook (dodged a bullet so-to-speak?) as he is the ONE in 68 in your world...but every two years that number is going up...and even if your kids are spared...do something about this today that may help other peoples' children...or your future grandchildren...go back to the top and read those stats again...what do you think they will be when your kids are having their own children?

Please get angry.  And then go to this website and share that anger:
Click here to contact our elected officials

For two years our autism community has used the mantra "1 in 88 can't wait..."

Well, now it's 1 in 68...and they are still waiting.