Thursday, February 17, 2011

Are You Auware?

I’m not an avid tv watcher, I’ve never really been into daily/weekly programs.  A friend recommended the show “Parenthood”, saying it had an Asperger’s kid on it.  I started watching in the fall, and now I’m addicted.  The series does a pretty decent job of portraying some of the quirks, realities and needs of spectrum kids, and has done wonders for Autism Awareness.   Max’s character has Asperger’s, the mildest and highest functioning end of the autism spectrum.  The issues and scenes with Max are the brightest snapshot of life on the autism spectrum…the majority of autistic kids are not this verbal, physically capable, or socially interactive.  Of course “mild” makes sense for television, and nonetheless the autism community is grateful for this breakthrough in a mainstream venue to educate and raise public awareness and (hopefully) tolerance and understanding. 

This week’s show was a masterpiece though – totally nailed autism  on several levels.  If you missed it, here’s the episode, spoiler editorial comments after…

Spoiler alert!

Nailed it, right?  Aspie Max has a meltdown when his aide changes his routine.  He ramps up to his meltdown: as I watch, I feel the same knot in my stomach, feel my shoulders tense as if I’m watching the interaction with my G and someone in the family.  I want to say, “Hey, it’s not worth a meltdown!  Give him the silly stickers!”,  or rush in to try to diffuse the situation with Max while still keeping the rules in place. 

Autism parenting is a balancing act, minute-by-minute coping decisions: holding fast to a new lesson or breaking down to save the remainder of the day.  So many factors enter into each decision:  my brain processes with the super sonic speed of a trauma unit worker, assessing the plans for the day and how they may be affected by one simple, often mundane decision which could upset the house of cards…and house of cardseveryone’s whole day.  As a caretaker to 3 kids, a husband, home, work, homework, sports, laundry, learning, advocacy, etc., these choices – and how they’ll affect everyone’s needs, moods and schedules -are a daily dilemma.   There’s nothing worse than feeling everyone’s disappointment or displeasure because you HAD TO prove your point over a silly, seemingly inconsequential matter.  But, as our experience has shown us, those matters ARE the big things for our spectrum kiddos.  I compare it to parenting a 2 year old: sometimes it’s easier to roll with it than to cause a public scene, hold up the rest of the family, or deal with another drama.  Yet if I give in, will he expect me to cave next time?  Am I teaching him that if he protests too much he can get his way?  It’s hard to know with autistic kids.  How much is in their control vs. out of control.  I don’t think G “works me” like a typical child, or 2 year old.  When he has a meltdown, he legitimately can’t get past it if I don’t diffuse the situation in time.  He spirals out of control and it becomes fight-or-flight for him.

Some experts direct us to hold our spectrum kids to the same high standards as our typical kids. We try.  Still others believe that our kids don’t do these things on purpose, they have no control over their exploding reactions and  confusing emotions - it’s their sensory system working overtime.  The inward struggle goes like this: I can’t let him walk away without putting his game away.  I usually try my whole bag of tricks, rewards, bribery before it reaches meltdown stage.  But sometimes he flies into a full blown rage/tantrum right away for no reason.  Sometimes I’m tired or running late and though I know it won’t help long term, I simply have to let it go.  If I have willing family members, we tag team, and relieve each other when the other team member gets worn out.  I’ve learrelayned to push G to a certain point, take a break and revisit it when he’s chilled a bit.  If time permits, if the situation allows.  Obviously if there’s imminent danger or consequences, it has to happen whether he takes action or I have to.

In this episode, Max flies into a shouting, fight-or-flight rage, sweeping books, toys, and throwing items helter-skelter in his path.  His outburst takes his aide by complete surprise, his abrupt change of demeanor, and she cries in frustration and shock.  As a parent in this situation, you feel an even deeper sense of failure, worry, helplessness, anger, sadness.  We take their disruptive behaviors on as a reflection of ourselves and our parenting ability.  This is true particularly with high functioning kiddo, because they may appear typical in some areas, spoiled or naughty when they erupt.  We live with this child always; at times we feel we’re ultimately responsible for his every mood, every behavior, every impulse.  Whilst the aide closes the door on our child after 30 minutes, 50 minutes, 2 hours (if you’re lucky enough to have an aide or therapist, etc.); we’re left surveying the wreckage and trying to figure out how the rest of our day’s plans will proceed with a freaked out, angry, sour family.  Because also like a 2 year old, the harder we try not to let it bother us, ignore or move away from the situation - the harder G instinctively pushes to keep it in our face.  G increases his volume, pitch, throwing, hitting, screaming, planting himself in one spot and rubber-legging it or stiff bodied if we try to physically pick up/move him.  It takes a conscious, sometimes grueling effort to remember that this is not personal, this is the autism we’re battling with, not the child.  The team approach works best for us, relieving each other when one of us gets too frustrated.  And humor, lots and lots of humor + hugs. 

tantrum yoga


Also notable is the episode’s portrayal of an adult Asperger’s man…bravo for opening this can of worry that autism parents fret over!   I knew the man was on the spectrum right from the first moment (as I’m sure writers wanted us to), but Adam and Kristina took awhile to discover that the birthday party entertainer they interviewed was Aspie like Max, thinking the man simply moody or strange for his odd  behaviors (such as taking a shower when he went t use the restroom – love it!).  They struggle with the morality of hiring/not hiring the man who has a lengthy list of rigid rules and compliance issues for his bug performance.  They worry about their own son getting turned down for a job someday because of his Asperger’s – making the decision weighty and personal.  Ultimately Max decides for them, his love for bugs win out over doubt.


The best scene was when Adam gives the check to Amazing Andy the Bug Man after Max’s party (after last commercial break on video).  Adam looks around at the bugs, gear, studies the Aspie, then awkwardly asks, “Are you happy with your job, your life, what you do?”  After getting no response, continues, “Are you happy?”

“Yes, sometimes,” Amazing Andy shrugs, then turns it around on Adam, “Are you happy?”

Adam pauses, smirks as he realizes the irony of the question, the meaning, “Yes.  Sometimes.” 

That’s all we can hope for.  We strive to make our spectrum kids lives full and perfect; but as multi-faceted, stressed, beat down, worn out adults, we’re all happy (just) “sometimes”.  It’s universal.

Thank you “Parenthood” for raising Autism Awareness: for opening a window for others to view our reality, for shining a mirror to parents of kiddos on the spectrum, for showing us in our isolation that we are not alone, for helping us to come to grips with our challenges, for allowing us see humor, hope and enlightenment in our struggles.  “Parenthood” – the tv series and the privilege – is Ausome!