Autism Awareness –you’re STILL doing it wrong!

It’s just a stupid fucking ribbon.  I hate ribbons.

It’s April 1st, the start of Autism Awareness Month.

APRIL FOOLS!!!!! Awareness? Try again.

If we had TRUE awareness I could take my child out in public and not cringe when he throws a bra in the cart and screams for me to buy him girls’ underwear… in the middle of Target… loudly.  I wouldn’t have to constantly say his name and tug on his coat every 5 seconds while in public to keep him reigned in and out of the personal space of others. I wouldn’t have the physiological stress markers of a combat veteran that I imagine come from the 24/7 vigil that I hold over my child to make sure he is safe, not in someone’s way, not staring inappropriately at a little girl or trying to tickle her, not grabbing the boob of some woman, not dropping his pants in the middle of the mall, not running in front of a bus to get away from a dragon-fly, not beating on me to get away from a small house fly…
I imagine a world where I can JUST POSSIBLY chill the FUCK out for ONE BLOODY MINUTE, take a breath… and yeah, maybe my son will peel back your wife’s bikini bottoms to sneak a peek but we’ll all laugh and shrug and say, “Oh, Autism!! You silly beast!” while toasting the day with a glass of wine. (Um… yeah… my son has done that).

Instead I live in a world where I have to control and apologize for my son every second of every day –and not because I want to or feel that I have to for any reason OTHER THAN keeping the heat away.  I never know when that ONE person he puts off will care enough to call the cops… and those cops would be ignorant enough to arrest him… and the DA ignorant enough to prosecute him… and the judge ignorant enough to allow a trial… and a jury ignorant enough to convict…

Instead I live in a world where people say, “Oh, that’s cool.” when I tell them that I have an autistic child. No. Not cool.  He doesn’t do calculus equations on a pane of glass.  He cannot shoot a basket. He can’t count cards.  He cannot take care of himself.  He will never live on his own.  He might be a piano genius IF ONLY he could get past the sensory issues that prevent him from expanding that talent, but so far no luck.  I am thankful that I don’t face what some parents do –like poop smearing and constant wandering off. Yes, I am lucky –luck is relative.

If we had true awareness people would understand that “Autism” is not a mental disorder to be included in the DSM. They would know that it is not a strictly genetic or strictly neurological in nature.

Autism Awareness is a joke.

Back before 1998, at the age of 23, I had two encounters with Autism. The first was this man who went to our church.  He was odd… changed seats often, didn’t talk to people but talked to himself, rocked back and forth in his seat and got up and paced a lot.  My mom said she went to school with him, but she never said that he has autism –I doubt she had a word for it. (Side note, recently this man was trying to communicate with my son and seemed to get pretty pissed that Gavin wasn’t responding to him 🙂 –it made me giggle).  My second exposure to autism was “Rain Man” –and that was it folks.

By a stroke of luck and sheer coincidence I knew my son was autistic when he was just 18 months old. YES, it was obvious and he was a text-book case, but no one really knew what autism was back then… not many anyway.  As obvious as it was I was clueless myself.  I happened to be taking an Infant and Child Development class and something I said caught the professor’s attention.  If it wasn’t for her, Gavin would have gone a couple more years without a diagnosis.

Even after my professor set me on the right path I had to push like HELL to get him diagnosed as having autism –EVEN THOUGH he was a fucking TEXT BOOK case.  I took him to the doctor about the speech issue –this doctor, who is deaf, said “Eh, boys talk later.” If it wasn’t so sad it would have been funny.  For one, Gavin was so fucking autistic at the appointment –toe running, hand flapping, vocalizations all over the place. No eye contact. No shared attention. No speech. No Language. For another… HELLO? DEAF DOCTOR?? Don’t you think we should at least check his hearing because… um.. maybe he is… um… YOU KNOW??? FUCKING DEAF????????” PUSH PUSH PUSH.

He turned 2 in November of 1998 and had the official diagnosis by Christmas time.  It was the ENT that actually hooked me up… not the pediatricians or family doctors in my town. It was the ENT that said “Well, I think he needs … uh, an eval in Pittsburgh. I don’t want to say anything yet because it’s not my place, but…”  I cut him off, “AUTISM? You can say it.”  “Yeah… Autism.” he admitted. Even still they all argued among themselves for months to decide who is supposed to give the official diagnosis! Eventually it came from a psychologist. For a medical condition!! Go figure!!

I tell you this because not much has changed.  I still talk to moms who cannot get a simple diagnosis for their kids as old as 4 or 5. AND STILL it is treated as a psychological disorder.  Doctors and some old school speech paths still toss out the “boys talk later” BS.  There are many aspects of autism awareness. YES, some still struggle to even get a diagnosis, proper supports and treatments, and acceptance in their community.

Over these last 12.5 years there have been treatments and causation theories that I shot down, like vaccines and special diets.  I can tell you now each thing I ignored boiled down to sheer ignorance.  I didn’t understand how the immune and neurological and gastrointestinal systems all tied in together… to the ignorant soul lacking this basic information it is easy to say there is no link. Today, there is NO EXCUSE for a single PARENT or PROFESSIONAL out there to NOT do this essential reading to educate themselves… to see what autism TRULY is –a metabolic disorder. AND ONCE that information is in your head, frankly I cannot see how one wouldn’t agree. READ READ READ.  Read it all like your child’s life depends on it, because it does.

As parents of autistic kids we often find ourselves ONLY preaching to the choir (and sometimes even the choir refuses to listen).  The mainstream media ignores us –or calls us desperate, fringe lunatics and liars.  The average human knows only what they heard on the news that one time (I will never forget the time Dan Rather tosses up a graphic of a syringe and says, “New study shows definitively that vaccines do not cause autism.” –that was it… nothing else, didn’t mention the study at all, gave no more info. Period).  The average human does not bother to listen to us and they certainly do not bother to do the research for themselves.

FUCK Autism Awareness Month.  We haven’t gotten it right yet.  It’s time for ACTION.  April is now declared to be Autism ACTION Month.  So go scream at the top of your voice and don’t shut up until you are heard.  Make them listen.

 

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