Thursday, May 22, 2014

Back in the Autism Saddle--Has Anything Changed?


Back in the saddle but not enjoying the ride...

The past few weeks have been crazy as I prepared for and defended my dissertation, took the whole family (7 people!) to California to see me receive my doctorate at USC, all the while enduring many FUA moments.  Ryan seems to always have tummy troubles when we go away, and this time was no exception, which made for some harrowing rides in our rental.

We returned to a very ill Java, Ryan’s so-called service dog, although I’m not sure he’s earned that title…poor dog got an ear infection and traumatized himself into a massive, systemic infection that required hospitalization.  Fortunately, he’s on the mend now.

I’ve been home three days and things are almost back to our normal, which isn't really normal at all, and once again I’m thinking about what to blog about.  Lots of abuse of autistic people in the news.  Children who were stabbed repeatedly with push pins, while their tormentors plotted aloud to pass the injuries off as bug bites…children who were sexually abused while riding their school bus.  This genius molester apparently didn’t realize the cameras on the bus would film him, too…an autistic girl severely beaten in her group home by a caregiver who said she was “an animal, and deserves to be treated as such”, while being filmed.  Acts that chill me to the bone, and have increased my resolve to homeschool Ryan should we ever have to leave Hawaii.
 
Remember when the tobacco industry studied smoking and concluded it was "safe"?
And we heard reports of yet another vaccine study—this time from Australia we were treated to a meta-analysis of other studies that all say vaccines are perfectly safe, as if a meta-analysis that evaluates only studies that say vaccines are totally safe could produce a different conclusion. Confirmation bias, anyone? I’d like to see a meta-analysis of the hundreds of studies that conclude the components of vaccines are neurotoxic and can cause a plethora of illnesses, but I don’t suppose we’ll see that any time soon, and even if such a study was conducted, it’s not like the evening news would cover it. These are the folks who get most of their advertising revenues from the folks who make the little blue pill, have discovered “restless leg syndrome”, or tell you to “ask your doctor if Lyrica is right for you!”
 
An ad for Cialis...not sure, but I think this couple is doing it wrong!
CNN ran a story about adults with autism—the kind where you don’t get diagnosed until you’re 40, or so, that leads the general public to believe autism is simply a diagnosis du jour.  Zoey, now age 38, was diagnosed at 34 and says that, “Autism is not a tragedy, but rather a journey of learning and growing.” Uh, sure. I am tired of hearing autism described in flowery and eloquent terms as a special gift.  Kids with autism are rarely eccentric geniuses who just think differently, but rather are very sick.  Autism is a medical condition and is frequently co-morbid with epilepsy, severe gut issues, severe allergy to food, autoimmune conditions, and as an added bonus, afflicts children unable to communicate their pain.  Sorry, Zoey—but from my perspective, you’re full of it.
Yeah, sure...stuff like this is confusing to the general public.   
These stories bring out the "It’s just a different neurology" because Autism is a gift crowd—I think only people with mildly affected children could possibly think this.  If they saw my child covered in rashes that make him look as if he had been burned with hot oil, with his belly distended from bowel issues, trembling uncontrollably while his eyes roll back in his head, or throwing his head back onto our tile floor for reasons unknown to us, you would in no way consider autism in a beneficent light.  
 
In entertainment news, I saw where singer Toni Braxton wondered if her son’s autism was a Godly act of retribution to punish her for having an abortion years ago.  Seriously?  A supposedly benevolent deity afflicted a child with autism to teach Mom how to be a better person.  Heavy sigh...I am always amazed when people make their child’s autism about them—they were given an autistic child to help them to grow, or because God knew they could handle it. Frankly, I've seen this infallible God fellow push a lot of families to their breaking points.
 
You have displeased me--your child shall have autism! Insert thunder and lightning...
Switching to politics, Rep Mica held a congressional hearing with only two days’ notice, to discuss the federal response to the explosion of autism cases.  We heard that autism spending costs the American public $126Billion annually, and yet Tom Insel, head of the Interagency Autism Coordinating Committee, who has nonchalantly overseen an explosion of autism on his watch, admitted he spends only 10% of his time on autism issues.  Bravo.

The past few weeks I’ve taken as much of an autism vacation as I am able, and upon return, it seems as if I never left.  Our kids abused, kids eloping, more pap studies, meaningless hearings in our do-nothing Congress.  As the French say, “Plus ça change, plus c’est la même chose”--or in other words, it's Business as Usual.



2 comments:

  1. I am a legit high functioning autistic adult and i say those people diagnosed.at 40 or whatever do not really gave autism. I have gastro problems myself that almost killed me as well as a genetic disorder nf. I was diagnosed at age 10 after adhd misdiagnosed an I am not a genius an not employed. I feel your pain maam.

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  2. I agree with you...there's a famous author who says he was diagnosed with Asperger's at 40. Not going to use his name because he has a Google Alert and whenever I mention him by name he writes a lengthy reply and seems to think I am trying to goad him. Definitely not the case. My point, if you are that successful and simply have personality quirks, chances are you are not autistic. Asperger's has become a catch-all for quirky intellectuals. My issue comes when they claim to speak for autism because they are autistic.

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