Wednesday, August 11, 2010

Blog the Ninth: What is autism?

So.  Let's get down to the nitty-gritty.  What is autism?

Well, there's the dictionary definition:

Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. Autism affects information processing in the brain by altering how nerve cells and their synapses connect and organize; how this occurs is not well understood. 

Hmm. Maybe it's better to say what autism isn't.

It's not just an eccentric little social quirk that makes people shy and hesitant and good at counting and memorizing numbers, which is useful for stuff like gambling or encryption. Like Dustin Hoffman in Rain Main, or what's-his-face in A Beautiful Mind.

Also, it's not - as an ignorant Christian once asked me - signs of demon possession.

NOT all autistic children are savants skilled in music, art, and...puzzles, like the one equally ignorant church nursery worker once implied when she told us after Zack's bad day in nursery, "Oh, we worked with an autistic girl once.  She was lovely.  She loved puzzles." A slight, disapproving frown.  "We tried puzzles with him.  It didn't work."

And,  the one autistic savant artist I know - who's had a standing contract with Hallmark since the age of six - may die before twenty because of his severe seizure disorder, which often develops later in an autistic child's life.

Here's autism as defined by me.  We're all born with the ability to "read the world" we're raised in.  To varying degrees, children without autism eventually "read" and understand social cues, disciplinary measures, do's and don'ts, pick up language - repetitively at first - but eventually synthesize what words and phrases they learn and mold them for their own uses, develop a personality based on the unique character traits given to them at birth.

Children without autism eventually - at different paces - learn how to play, make choices, communicate their wants and needs, express affection and most importantly, learn how to deal with their emotions and feelings, how to appropriately express and regulate them.

Now imagine a child that:

1. is born unable to read or make sense of the world in the way everyone else does.  I don't mean someone who is just "unique".  I mean, imagine we're all born with a "humanity primer" in our heads, and they aren't.

2. has a "block" that interferes with their communication.  For some cases, it's very mild to moderate - hence, the "Rain Man" types.  Makes them quirky, eccentric loners. 

For others, its severe - no verbal ability or very limited abilities.  This relates to both "receptive" communication and "initiative" communication.  They cannot communicate with the outside world - initiate - and because they cannot receive communication from the outside world, they do not learn, grow, or understand the outside world's rules.    

3. has no emotional control.  Because they can't initiate communication - or have problems doing so - they can't express their wants, fears, hurts, or needs.  This leads to extreme frustration.  Maybe depression.  Uncontrollable rages.  Which leads to self-injurious behaviors like head slapping, banging their heads on the floor.  Biting.  And, of course, because they can't receive can they learn these behaviors are inappropriate, and even harmful to themselves?

* A note: some children, if caught soon enough, can eventually - albeit at a very slow pace - move past this.  Some NEVER will.  And, even those who do improve...will never live or see or understand the  SAME world we do.  Again.  This is not being "unique".

Now, for those who may thinking, "Ridiculous.  Autism and ADHD and Aspberger's Syndrome are all made up by this lax society, something to push the sale of medications.  It's not real."

No offense - but you're an ignorant, uneducated fool.

There are lots of good, solid reasons why these behavior disorders are more prevalent today, and I'm not going to deny the medication sale angle.  However, it's largely because the best...and maybe only...defenses against or moderator of these behavior disorders are the following:

1. order and structure in daily life and the family home
2. a stable family environment with two parents who work together and support each other
3. a stay at home mother who is with the child from birth to kindergarten, able to teach and mold one on one, daily (to be fair, even the best homes lack this today because of the sagging economy.)
4. a household based on consistent, firm rules
5. a household where electronic, short-attention span devices (television, computers, etc) are regulated - or denied entirely - a household where reading and listening is encouraged.

Say what you want about our world's ultimate fate, but I'm going to go out on a limb and say the above factors are sorely lacking or missing entirely from most households today.  I should know.  I've been teaching for almost eleven years.  I see the results of this in "normal kids" every day in class.

But, regardless:  autism is REAL.  It's a disorder that can be pushed against, lessened, moderated, and depending on the severity of the child's autism, that child CAN learn skills that will help them triumph over their autism.  However:  their autism will never "disappear".

What does this mean for parents of autistic children?  The following:

1. no one will ever understand.  Period.  This isn't a narcissistic, "you don't understand my pain" whine...but no one ever WILL understand.  Unless you're in the "belly of the beast", so to just can't.
2. Their lives (parents) will be utterly consumed by their child's autism.  Maybe only for a time.  Maybe for life.  Maybe their lives will be destroyed.  Their marriages are certainly at risk.  A recent study showed that over 60% of marriages which produced special needs children ended in divorce.  I highly doubt this is because they were all self-centered jerks who didn't like being married and didn't love each other. 
3. "normal institutions" - schools, clubs, sports teams, activities, and yes, even - maybe ESPECIALLY - churches - will never understand, and most likely will not make accommodations willingly (because in regards to the later, all you need is stern discipline spare-the-rod-spoil-the-child, and prayer. If those don't work, you must not be a very strong Christian).  

This means those parents will spend nearly every day fighting for their children in a way "normal" parents can also never understand.   They will grieve for the things their children have to experience, that other children will never have to bear.

For example.   The other day we got a call from Zack's school because he'd fallen asleep at his desk, and they wondered how he'd slept the night before.

Okay, wait.  He's THREE YEARS OLD.  And he  was so tired, he fell asleep at his DESK.  At a school he needs to attend year round, through most of the summer, even.

Don't get me wrong.  His growth has been phenomenal because of this school, and we thank God every day he got in.  It's world-renowned for its autism intervention. 

But still.  A three-year old who's been attending school seven hours a day, five days a week with no nap, almost all year-round - since the age of two - and he falls asleep at his desk?

That's.  Just.  Wrong.

Our son has autism.  Our daughter is on the Autism Spectrum of Disorders.

Welcome to our life.