You Want The Truth?

When you think of autism (and when I say you I literally mean you, not the collective you) what comes to mind?  Rainman?  Jenny McCarthy? Vaccines? Epidemic?

Those are the things that came to my mind before we started on this roller coaster journey with our Z.  We were sorely uninformed.  And why would we be anything else?  Autism….the big A….makes headlines only when it’s discussed in the most fantastic, terrifying, horrifying light.  Because….well….unfortunately, that’s what makes headlines.  The media throws it out there and we as consumers gobble it up.

And, once you’re required to become educated, you still wonder.  Even if you read all the scientific articles and listen to all the experts, you still wonder if all the hype is right and all the data is wrong.

But, here’s the truth…from me to you.  The hype?  The media?  It’s a load of crap.  Autism does not equate Rainman.  Jenny McCarthy is not a medical expert and she did not cure her son.  Vaccines do not cause autism.  Autism is not an epidemic.

Lemme break it down for you….piece by piece.

Rainman.  Autism is a catch all phrase for the diagnostic criteria outlined in the DSM-IV.  The technical name is actually Autism Spectrum Disorder (ASD).  ASD encompasses a HUGE range of disorders.  Underneath the umbrella of ASD, you find Asperger’s Syndrome, PDD-NOS, “classic” Autism Disorder, Rett Syndrome and Childhood Disintegrative Syndrome.  On one side of the spectrum, there are the non-verbal, non-communicative individuals who truly live inside their own world.  They are what you think of when you think of autism.  On the other side of the spectrum, there are individuals like Dr. Temple Grandin, John Elder Robison, Einstein, Bill Gates (both of these are unofficial but lots of folks believe they’re on the spectrum)….and, my man Z.  ASD comes in all shapes and sizes.  No two individuals present with the same symptoms.  Some of the comments I’ve heard within the autism community that ring true to me are: “If you’ve met one person with autism, you’ve met one person with autism.”, “A Star Trek convention is code word for Aspie reunion.”,  and “Engineering?  Oh, you mean Asperger’s.”

Jenny McCarthy.  I have mixed feelings about our little Playboy Bunny.  On the one hand she’s done enormous good for folks and families living with autism.  She made it a household word and brought more attention to the issues than any every day type Mom could.  She’s famous and loud and outspoken.  So, thanks, Jenny.  I appreciate what you’ve done to raise awareness and I respect what you believe you’ve been able to achieve with your son.  I also respect your right to believe what you believe.

But, that’s where I stop.  I do not believe you can “cure” autism.  There is no cure for autism because it’s not a disease.  ASD are neurological disorders.  It’s the way an individual’s brain is constructed.  People on the spectrum experiences and understand our world in a much different way than we do.  Their brains are wired differently than us “NT’s” (neuro-typicals).  It’s not something to be cured.  And, anyone that’s on the spectrum and has a voice will tell you the same.  They don’t NEED to be cured.  They don’t WANT to be cured.  They want to be understood and accepted.  And, I’d argue that not only do we need to understand and accept them, we actually need THEM more than they need US.  These are folks who, because they view the world in a different way, can come up with different, better, newer solutions to the myriad of problems we have.  I’ve heard it argued that Aspies are actually the next step in human evolution.  There’s no denying that most are extremely intelligent.  And there’s no denying that if given the right tools, they can make extraordinary changes in our world.

OK.  So, no, I don’t think you can “cure” autism.  I do, however, think you can help.  These folks need to be taught basic social and behavioral skills that come naturally to us NT’s and are absolutely required in order to function in our society.  Take Z for example.  When he was younger he had no capacity for imaginary play.  That’s why his first instinct when he came across a new toy was to flip it upside down and spin its wheels…he was trying to figure out how it worked.  We literally had to teach him how to play.  We had to teach him to use his imagination.  It was a fascinating time.  At first, he would just hold his airplanes or spin the propellers or wheels.  We’d intervene and start flying them around the room, making airplane noises…..and he’d follow.  Then we’d start playing take off and landing.  And people getting on or off the plane.  And planes going to different places.  He progressed from copying us exactly to choosing destinations he knew about to making up names of places, things people saw there and things people did there.

We have to teach him basic social skills.  A good example of this was a few weeks ago at a playground.  Z was playing by himself with his airplane and S had made a friend and was running around with her.  As an NT, she took to the give and take and loosey-goosey structure of playing with another child naturally.  On the other hand, Z wanted them to do what he wanted to do….bury his plane in the sand.  And he couldn’t understand why they weren’t doing it.  So, he came up and asked me,

“Mommy, how come no one wants to be my friend?”.

After I picked my broken heart up off the floor, dusted it off and duct taped it back together, I said, “Well, Z, sometimes other kids don’t want to do what you want them to do.  They want to do what they want to do.  Did you ask the girls if they wanted to bury your plane in the sand?”

“No.”

“Well, why don’t you invite them over?”

…..”Girls, you can come bury my plane in the sand now.”

OK….not a perfect invite, but it worked.  Mostly because S adores her brother and is always looking to play with him.  The girls came over and buried the plane in the sand with him.  That is, until he got upset because they were doing it differently than he was and he tried to force them to do it his way.  At which point they got up and went off on their merry way…playing something totally different.  Again, it wasn’t a perfect attempt but it was a successful at bat and it gave me yet another teachable moment with him.

“Hey, buddy.  Why do you think the girls stopped playing with you?”

“I don’t know.”

“Well, I think it’s because you wanted them to bury the plane your way and you got upset when they were doing it their way.  Sometimes it’s ok for people to do things differently than you.  It’s not wrong.  It’s just different.  I bet if you tried it again sometime you could get them to play your way for a little while if you played their way for a little while.”

He thought about it for a moment (it takes him longer than a typical kid to process things sometimes) and then jumped up and ran off to play on the jungle gym with the girls. “Girls…..I’m going to play with you now.”

Mommy 1.  Asperger’s 0.

Vaccines.  Vaccines do not cause autism.  Let me repeat that.  Vaccines do not cause autism.  The study that showed a link between vaccines and autism has been debunked multiple times and Dr. Wakefield, who did the study, has lost his license.  Here’s the truth.  Autistic traits don’t generally become apparent until around 18 months at the earliest….which is right around the time that kids get their MMR shots.  Autism is a neurological disorder.  Or, to put it in a more positive light, Autistic brains are wired differently than NT brains.  And, it has a genetic factor.  When you start learning about ASD, you start to realize that the traits associated with ASDs run in your family.  Or, at least, that was the case in my family.  But, and I repeat, Vaccines do not cause autism.

Here’s the other thing about vaccines.  All those sensationalized stories about kids developing properly until they got their vaccinations and then started losing skills?  Well….that’s a small subset of people diagnosed with ASD.  And it’s not entirely accurate.  There are kids who develop properly until they get to a certain age and then start losing skills.  It’s called Childhood Disintegrative Syndrome.  And, probably more than any other diagnosis on the spectrum, it breaks my heart the most.  I cannot imagine what the parents go through.  Here they have this perfect, beautiful, developing child and then for some unknown reason, their child stops talking.  Stops making eye contact.  Stops responding to their name.  Stops giving hugs.  It’s heart-wrenching.  And I understand why these parents search for answers and point fingers…they just want to know why.  And why them.  I would do the same thing.  But, I do stand by my belief that vaccines do not cause autism.

Epidemic.  Everyone’s seen the headlines: 1 in 110 children diagnosed with autism.  1 in 80 boys.  That’s up from 1 in 1000 a few years ago.  That’s scary as hell.  And, it’s true.  More kids are being diagnosed with ASD these days than ever before.  But, it’s not because it’s an epidemic (although I do believe that the crap we’ve been feeding our kids: GMO, chemicals, etc is certainly not doing anyone any good.).  It’s because more kids are being diagnosed with ASD.  Because the diagnostic criteria for ASD has been relaxed since years past.  Historically, the DSM required a ASD diagnosis to have something like 12 of the 15 criteria confirmed.  Now, it’s something like 6 or 9.  Asperger’s Syndrome as a diagnosis didn’t even exist until 20-30 years ago.  And it wasn’t until even more recently that it was lumped under the ASD umbrella (side note; they’re considering separating the two in the DSM-V because…wow…that spectrum is HUGE right now).

So, those little engi-nerds you grew up with?  The super smart but socially inept boys in your high school that you teased but still wanted them to help you with your homework that grew up to be multi-millionaires and hugely successful business men?  If they were children today, they’d probably be slapped with an Asperger’s Syndrome label.

So, is that uptick in diagnoses good?  Or are we labeling every childhood challenge unnecessarily?  I don’t know.  J and I struggled with getting Z evaluated and labeled but eventually decided to because we recognized he needed interventions.  Regardless of the label, we know he needs some additional understanding and some additional support.  And we needed to be educated in order to help him be successful and happy in his life.  We also struggle daily with how much to tell people.  We want to educate people and make things easier for him as much as we want to help him be able to function properly in society.  We want the interventions but we don’t want the fear  and mis-understanding that immediately comes when you say the word Autism.  Which, honestly, is why we go with the label of Asperger’s more often than not.

So, there’s the truth.  At least it’s the truth in my book. Think you can handle it?  I’d love to hear your feedback and thoughts.

“It is not enough to prepare our children for the world; we also must prepare the world for our children.”