Wednesday, January 20, 2016

Spectrum of Chaos

I'm a lover of a feel good story.  Always have been.  I'm the girl who cried when Oprah gave out her "Favorite things" to the audience because I was happy for them, and the girl who cried when I read a story about a boy with no arms and legs who wrestles in Ohio.  I'm just that girl.  So, naturally when I write I have a tendency to write feel good stories; however, another autism parent, another autism parent-blogger, put up a post the other day entitled, "reasons-i-dont-like-feel-good stories."  (Click on the title to read his article.)  The whole time I was reading it I couldn't help but to think, grass is always greener buddy.  And so I decided to touch on this topic a bit more and expand my reasoning and justification on why I think a good feel gooder can't be all that bad for the autism community.

The reason "advocates" and Autism Daddy seem to not like feel good stories is because they "think" it puts too much of a positive spin on autism.  That for those of us who have children who are able to speak on the spectrum and accomplish tasks, like being integrated in normal classes, get a driver's license, and pretty much anything notable, will be detrimental to the fight and struggle to get funding, resources, and education for all members under the autism spectrum diagnosis.  They also worry that it shines to much of a positive light on how hard it is to struggle with a child, teen, adult on the spectrum.  To this I can understand their reasoning for about point five seconds until I think, ummm no.  Not buying it.  You just think the grass is greener advocate person or parent who has it hard.  Here's why.

I'm a scientist.  I have worked on many, many research projects that were funded by different avenues, such as governmental, private, corporate, etc.  The one thing they ALL had in common was the need to progress and demonstrate findings.  NO ONE, and I mean no one wants to fund something that brings no step forward in the scientific community.  And if your results look like you got no where, better spend some sleepless nights in the lab figuring out how you can spin it to make it help in some way.  Look for that silver lining.  So, if we keep posting stories that aren't progress, cute, feel good, melt your heart stories, guess what.....bye bye funding.  Bye bye million dollar donations from the rich folk.

Think insurances will want to pay for therapy that goes no where.  No.  Think governments, pharmaceutical companies and universities want to do or fund research that keeps saying,....yup they are still stimming and we don't know why.  Or yup, they still can't speak, or have seizures, or not sleep, or obsess, or, or, or, or, or....  Catch my drift.  The good helps the bad.  The bad helps the good.  The ying is the yang.  It's a balance, or an of my favorite words in the English language.  But there is also another reason.

IT'S A SPECTRUM DISORDER.  An umbrella like so many like to say.  Here's how I like to explain it to someone who is new to the idea of autism.  The diagnosis is just like cancer.  Cancer is a spectrum, umbrella disease.  Think of a conversation you have undoubtedly had with someone.  

"Did you hear Uncle Bob has cancer?"
"Oh no, that's horrible...."

Fill in the next part of the conversation.  More than likely the session proceeds in the following manner.

"....what kind of cancer is it?"
"I think they said prostate."
"Oh.  I heard that's not so bad.  I'm sure he'll be fine."

Ask Uncle Bob.  I'm sure he is not so fine with that diagnosis, and because someone 'thinks' they know what prostate cancer is like, or breast, or lungs, or pancreas, or whatever, but until your family undergoes that type, you can never and will never know what each and ever individual feels or goes thru and how their family deals and handles the situation.  You can't.  It's impossible because each case of cancer is unique as the person that has it.  Enter autism.  Each individual is a unique case, with special circumstances and no two are alike.  

When it's a spectrum disorder, all NEED to be included.  They should be included.  My sons includes the nonverbal with the verbal kids in his autism room, in that he honestly doesn't see a difference.  Know why, he's a kid and hasn't been taught jealousy yet.  Just within the last couple months has he noticed that he's different than the other "normal" kids in his "normal" class, as he calls it.  And guess how hard it is to listen to your kid tell you, the parent,  that he knows he's different and the other kids know too.  Guess how hard it is to have a verbal autistic kid with high intelligence seek out sharp objects to cut himself with to "feel" or release?  Guess how hard it is to realize your kid gets lost in his head and you can't get him to respond for long periods (days, weeks) and you just have to wait until he comes back?  Guess how hard it is to realize that your kid can mechanical figure out how to work something complex that you yourself can't do, but can't wipe his own bum?  Or, and this I admit is going to hurt us all, guess how hard it is to have your kid stim verbally the same questions over and over and over again and you can't get them to stop and you think I wish he would just stop talking already!?  Am I complaining.  Damn right.  And its okay,  And its okay for someone with a nonverbal child that to complain too!  And tell good stories.  It's okay because in the grand scale of things, we are all in the same boat.  We just want the best for our children.  I can not imagine, nor pretend that I know what it's like to not hear my child talk.  Or walk. Or have seizures. Or not eat.  Or not go to school.  My heart breaks when I read so many of those stories, and I think I'm so lucky.  But that doesn't mean I need to or have to down play our struggles as well.  Nor should I not tell or expand on the funny side of life because I'm a feel good story person.  I'm just a individual who likes to play with the glass half full. 

My feel goods are still getting attention to the subject of autism.  Any publicity is good publicity. Search  #autism and see what you get.  A ton of Aspie's, nonverbal, parents grandparents, people all talking on all levels about autism.  Its amazing!  Feel good, feel bad, it doesn't matter.  There out there talking it up.  A few years back no one knew what autism is.  Today we have walks that thousands attend.   And tomorrow who knows what will happen.  

So after all the above, I have this to say.  It's raining autism folks, so open your umbrellas.  :)      

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