REAL Autism Awareness: How Our Kids Get the Shaft

I keep getting information on the so-called “autism awareness month,” but since I don’t support Autism Speaks, I refuse to light it up blue.

But that said, as the mom of a child with autism, and as a member of a community that already affects 1 in 88 children, and if trends keep consistent, may grow to a far larger portion of the American public, I feel it’s my duty to raise awareness – not of autism, but of how people and children with autism are treated.

And that answer is: Cruelly.  Unfairly.  Unjustly.

First, we had the backlash against the Newtown, CT shootings, when 20 children were murdered last December, and the perpetrator was given the label of being autistic.  No evidence supports that, and yet our children get this rap of being violent.

Our kids are equally saddled with this ridiculous notion that they have no emotions (just like, say, a sociopath).  Cultural opinions led me to worry about my daughter’s soul, which, I’m happy to say, is perfectly balanced, peaceful, spiritual, and on her way to becoming a woman of faith.  Another myth flies out the window, but instead of getting better, stereotypes, mishandling, miscommunication and sheer bone-headedness are still as much the rule as the exception.

Today, we have the troubling case of Alex Spourdalakis.  After several months of suffering sleeplessness, bowel disorders, and GI distress, Dorothy Spourdalakis brought her son non-verbal son with autism, Alex, age 14, to the hospital in February.  He was physically aggressive – no doubt, because of his pain and frustration – and locked in restraints, naked and kept that way for 19 days.

19 DAYS.

Imagine being unable to communicate, and being in pure intestinal agony, and then chained, wrist and ankle, to a bed.  Can you?  Because I can’t.  I would probably scream my freaking head off.  Read the full story and check out the shocking photos here:

Day 19: Chicago Hospital Locks Down Autistic Patient

You would think after being that careless and stupid, the hospital would listen to Alex’s parents and try to get him some help for his agony.  The hospital has only gotten worse, refusing to investigate any internal issues that this boy may be suffering, God knows why.  Read this article to get to the heart of what Loyola is NOT doing for this suffering child:

The Case of Alex Spourdalakis: Continued Ineptitude at Loyola University Medical Center

His godmother’s words strike me the  most:

“But how do you know?  How do you know what is bothering Alex when you do not test? Why do we give him medication after medication without knowing?”

There we get to the heart of the matter.  “Autism is behavioral. Period, end of story.”  No child with autism could ever possibly be suffering GI distress.  No amount of impossibility to potty train, constipation, diarrhea and accompanying rashes, smell, and odd coloring could indicate that autism (and the thousands? millions?) of parents whose kids with autism HAVE gut problems could possibly convince the amazingly brilliant and stunning brains behind Western medicine, but we can definitely introduce psychotropic drugs that have not been tested on growing minds!

This is what you need to be aware of regarding autism: that there is a growing body of uncorrupted science finding links between autoimmunity problem, imbalanced biochemistry, poor methylation, inflammation, and other medical and physical problems to autism.  That kids with autism do suffer silently.  That giving them drugs that “improve” does not cure the pain, it just numbs them to caring.

I thank God EVERY DAY AND NIGHT that Zoe is where she is at right now, that she is relatively happy, and that we are on a path to treat her that both Chris and I are comfortable with, and that I feel is God-led.  I pray EVERY DAY AND NIGHT for her health, her medical balance, and that she will never need a hospital.

Update: This boy was released after a few months but sadly, murdered by his mother and aide shortly after. A heartbreaking ending to a very painful story. This is the reality of autism: no hope, too much pain and desperation, no money, no answers, no support.

 

Image courtesy of Arvind Balaraman, / FreeDigitalPhotos.net