YOU DON’T KNOW JACK

I find one of the most obnoxious, frustrating parts of parenting a child with autism is vaccine-gate. I hate the whole topic. I don’t know where I stand on it. Know why? I don’t have time to read freaking medical studies. I’m too busy spending twice as much at the grocery store on his special diet (it’s working medical community) and patching the holes he puts in our walls with his head.

A year or so ago some family won a huge judgement validating that their daughter’s autism was partly caused by vaccinations, but within the last week some major paper linking vaccines to autism had to be retracted. I’d find the links to both stories, but I really don’t even care enough.

I care about one thing. I care about kids with autism, especially mine, growing up to live productive, happy, independent lives. I care about the general public understanding autism enough to celebrate the strengths and unique talents of autistic people and help them with their weaknesses.

I’m not even sure I want a cure. While I don’t believe my son was born with autism, I also don’t know who he would be without it. We’re grateful that many of his symptoms are things we consider talents. That’s why it took so long to diagnose him. He has talents in math and art that he simply wouldn’t have without autism. I’ve said (and taken heat for) before that if there was a magic pill that would reverse his autism I’m not sure I would give it to him. I believe in God. I believe God makes each human being a certain way for a certain purpose. I wonder if 20 years from now the world will face some challenge that only the mysterious minds of autistic people will be able to solve. Or maybe not.  I don’t know and neither do you.

It seems like with every major medical issue with awareness, comes commerce. I believe the most vocal voices on both sides of treating autism are personally and professionally invested in “being right”.

Jenny McCarthy and her son Evan have become the faces of autism in America.  I don’t necessarily agree with her, but I do think she is really misunderstood.  The type of autism Evan has resulted in seizures.  That was what led to his diagnosis.  Imagine standing by helpless as your toddler experiences that.  Evan had one seizure that put him into a coma.  He almost died.  That gets her a lot of slack with me.  This goes way beyond lining up toys and not making eye contact. 

I also think there’s a big misconception that Generation Rescue (Jenny McCarthy’s group) and those on the side that believe vaccines, specifically the preservatives in them, contribute to autism advocate stopping vaccinations altogether.  I’ve never heard any serious person suggest that.  What I have heard them say is that there should be a safer vaccine schedule and we should look at the various preservatives used in them.  It’s not as simple as just mercury.

Then there’s the medical community.  It goes pretty much like this:  “I’m sorry ma’m, your son has autism.  Just like that kid and that kid and that kid.  We have no clue what causes it, but we know it sure as hell wasn’t anything WE did.  Also, Jenny McCarthy is the devil.  See ya’ in 6 months!”  You’ll have to forgive me if I have trust issues with the medical community.  Now my kid might also have ADD, and I get to go through all this again over Ritalin.  That’s why mommy drinks.

Now the dialogue is constipated.  I’m afraid McCarthy’s hostile approach towards the medical community has only made things worse.  Is a cage match between a retired Playmate and representatives of the AMA and CDC on Larry King really helpful?  It seems like emotions and pride got the best of everyone, they went to their corners and productive discussion ceased.  

Meanwhile, parents, educators and hands on physicians have to figure out how to help these families just get through the day, literally.  I think the last stat I heard was 1 in 86 boys in America will have autism.  I find it difficult to believe the numbers skyrocket that much from a genetic cause or loosening of the definition of what autism is.  There is something in our environment that is, at the very least, contributing to the epidemic.  While Generation Rescue, Autism Speaks, the CDC, the American Academy of Pediatrics, the AMA, the local Elks lodge and Dr. Greg Gutfeld point fingers, thousands of families like mine are just trying to get through the day, heartbroken and confused.  On behalf of families like mine, I kindly ask you to pull your head out of your ass, put on your big girl pants and figure out what we’re gonna do to make sure these brilliant children become contributors to society instead of drains on it.  I think the latter would be the saddest thing of all.