Fwd: [Autism] Putting embarrassment in its place(OT?,but beautiful and thought-provoking)

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http://www.twincities.com/opinion/ci_9685529?nclick_check=1

Putting embarrassment in its place

By Caryn Sullivan

Article Last Updated: 06/24/2008 07:31:22 PM CDT

Last week, the Pioneer Press featured an article by Campanelli with the

headline: 'Truth? They dare.' Campanelli wrote that one of the terrible things

about being a parent is 'like it or not, your young kids are going to

embarrass you.' He noted that when kids are young we tolerate their socially

unacceptable behavior, such as loudly commenting about Santa's bad breath

while perched on his lap. Adults are typically empathetic (they've been

there), and other kids are amused.

As kids mature, however, the circle that encompasses acceptable behaviors

shrinks. By middle school, adults consider students who comment on another's

halitosis rude, not cute. The mischievous kids who hovered at the perimeter of

the social circle either shift toward the middle or become ostracized.

I suspect that many who read Campanelli's description of the 4-year-old girl

who loudly commented about a gentleman's " big butt " had a similar experience.

Just last week, my 17-year-old with Autism Spectrum Disorder (ASD) made such

an outside-the-circle remark in public. What is a passing phase for most

parents seems destined to be my lifetime companion.

I suspect some families dealing with conditions like Tourette Syndrome, ADHD

or Alzheimer's, to name a few, are acquainted with the mortification zone,

where I often dwell. Since I have a relatively low threshold for

embarrassment, I've been mortified by my guy's behavior on countless

occasions.

Is he to blame? By virtue of his condition, he doesn't have a dependable

filter that stops him from blurting out comments or doing things others might

consider, but reject.

I feel guilty because I know the nuances of what is cool and what is taboo are

confusing, and the line between entertainment and embarrassment is fuzzy for

him. Yet, I also know he relishes making outrageous comments. Always the

entertainer, he can't comprehend why we laugh when comedian Jim Carrey talks

with his butt cheeks in " Ace Ventura: Pet Detective, " but gasp when he mimics

Carrey in the crowded Chicago Shedd Aquarium with his shorts around his

ankles.

If I don't always know how to interpret or respond to his behavior, strangers

are understandably clueless. I've often longed for a symbol like a wheelchair

or white cane to broadcast his challenges. Absent that, I constantly run

interference to protect us all from others' misunderstanding or judgment.

Lately, I'm wondering whether I'm observing the unintended consequences of a

lifetime of being coached into the circle, manifested at times by high

anxiety, low self-esteem and defiant behaviors. Is it time to accept that he

is who he is? Is it time, as Campanelli suggests, to " let it go " ?

As I pondered these questions Sunday night, my husband returned from searching

for 25-year-old Kennedy, a man severely challenged with autism who

wandered away from his Wisconsin camp. A week after Kennedy disappeared,

firefighters found him, dehydrated and covered with bug bites but,

miraculously, alive. Suddenly, my concerns about embarrassment were well,

embarrassing.

While having a " runner " like Kennedy is inordinately stressful on a

family, it's one of many challenges of living with a person with a

social/communication disorder.

I've canvassed friends about their most embarrassing moments with their

special needs kids. Junior pooping in the public pool on the hottest day of

the year took the prize.

While we've endured some unmentionable incidents, we've persevered through a

thousand more-trivial embarrassments touching the untouchable on a White

House tour, speaking the unspeakable at the movie theater with the threat of

" the big one " a pool-closer always lurking in the background.

But everything in life is relative. With Kennedy in the hospital ICU, I

recognize there are worse things in life than being glared at or stared at in

public.

With him safely asleep in his bed, I appreciate our son is a complex guy who

adds a lot of color to our lives. He's the one who put me under the table when

he told our new friends that " everyone who read 'The DaVinci Code' knows that

Jesus was banging Magdalene, " but made my heart soar by performing a

stand-up comedy routine at his new school; he's the baby lover who makes us

squirm when he touches or blows air kisses to every baby he encounters, but

made me proud by offering his money jar when he learned the University of

Minnesota was raising money for a new Children's Hospital; he's both a

teen-age guy who loudly told his brother to check out a woman's cleavage and a

mama's boy who says, " Mom, you have bags under your eyes ... but you're still

beautiful. "

I see that I have a choice about how I relate to him. I can embrace the

lighter moments and deflect the embarrassing ones. As to others, I can

establish a context for his behavior so they might be less offended or hurt if

he ignores their attempts at conversation, for example. As to him, I can keep

trying, gently, to impress upon him that good manners are important and that

others' feelings matter, too.

When I confront the mortification zone, I can remember the Kennedy family's

courage and fortitude. I can wrap myself in armor constructed of our guy's

sweetness and humor and coated in the Kennedys' faith and resolve, and stop

being embarrassed by outside-the-circle behaviors. If the Kennedy family can

survive the past week's nightmare, then I should be able to kick embarrassment

out of the house and invite acceptance to move in, at long last.

Caryn Sullivan is a Minnesota attorney and writer. Her column appears from

time to time on these pages. Her e-mail address is carynsullivan@....