by Kristen -

In a Heartbeat

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Last week I watched a “TED Talk” presentation of UK teenager Rosie King discussing her autism, emailed to me by a friend.  It was titled, “How autism freed me to be myself.”

Rosie has made a splash since her “self-diagnosis” at age nine, later confirmed by doctors as Asperger syndrome, and her “burning desire to help make the world a more tolerant place for people with autism.”  Described as a “storytelling activist” by the TED site, “Rosie King challenges stereotypes of people with autism and contextualizes the issue by asking us, ‘Why be normal?’”

Perhaps it wasn’t the best time for me to be asked that question.

Earlier that day my husband and I visited my son at his group home in Wisconsin, planning, at the suggestion of one of his caregivers, to take him for a much-needed haircut.

This is more complicated than it sounds.  As I’ve written about frequently, Daniel’s rigidity makes any divergence from routine a dicey, even harrowing proposition.  Taking him into the community for any reason is a challenge none of us take lightly.

At nearly six feet tall, he is a force to be reckoned with when agitated.  We brace for our outings these days.  Without warning my son with autism can become aggressive and out of control, grabbing, lashing out, even biting those in his path.

Accompanied by his caregiver, however, we had Dan’s hair cut at a Great Clips in town.  It was a successful outcome this time, but only in retrospect.  That small task was a stressful, intense ordeal, as so many of our experiences with Daniel have been since the day he was born.

I wish this wasn’t true.  I wish more than anything that he was not burdened with a disorder that makes so much of his life challenging, that causes him to behave in ways I’m certain leave him as distraught as we are.

I wish a simple haircut was routine.

But this isn’t the pattern of our world.  Daniel isn’t “normal.”  And that isn’t something I feel like celebrating.

Rosie King’s TED Talk underscores the broad spectrum that autism, as defined by the medical establishment, now encompasses.  That she could speak so confidently to an audience of over a thousand demonstrates this.  Her “autism” bears so little resemblance to the autism I know, however, that it was more like watching a very bright woman describe her thought processes than listening to any person with true autism that I’ve ever encountered.

Her premise, as I understand it, is that society must move toward greater open-mindedness and be less prone to labeling.  She recounted her school experiences, her heightened ability to communicate with her non-verbal autistic siblings, the myriad ways in which embracing her differentness has enhanced her life.  She got a big laugh when she remarked, “What if the biggest compliment you ever received was, ‘You’re so normal?’”  She challenged society’s assumption that “different,” as in “autistic,” is a detriment at all.

This attitude is popular among an increasingly vocal segment of the autism community, with many “higher functioning” autistic people and their advocates insisting that autism isn’t a disorder but a different way of thinking, denouncing the stigma of disability and the stereotyping the word autism brings.

I have no problem with that, in itself.  Of course none of us should be defined or restricted by others’ perceptions.  I am in favor of “thinking outside the box,” as Rosie King champions, of all persons being free to explore and achieve their highest potential.  Who isn’t?

Except that vocal faction, represented by Rosie King’s “autism” speech, paints a terribly misleading picture of what true autism really is, the devastation and ruined lives it leaves in its wake.  And that is harmful to the vast numbers of those suffering from the ravages of classic or severe autism.  It skews the perception of the serious and wide-ranging toll this disorder takes, and influences those with authority to direct help to the people who desperately need it.

After her speech hit the internet, Rosie King was lauded for her stirring message. Trendinghashtag.com reported some of the comments Tweeted around the globe:

“Why make everyone normal when we can celebrate imagination! Rosie King!”

“Proud young Rosie King with autism: what if the biggest compliment you received was, you’re normal? She is extraordinary.”

“Rosie King reminds us to put the PERSON first. One of the most inspirational + REAL talks I’ve ever heard.”

Real in Rosie’s world of autism, perhaps.  But not the world of autism I, and many of my friends, are living in right now.

That kind of autism isn’t quite so inspiring.

It is an inexplicable tantrum during brunch at a restaurant where your teenaged daughter is waitressing, requiring paramedics and a trip to the hospital to treat bites your son has inflicted on both of you.

It is a woman seeking emergency care for her 20-year-old grandson while his mother undergoes a double mastectomy, only to be told his needs exceed the parameters of the very facilities meant to provide that care.

It is my friends’ son requiring seven people to hold him while general anesthesia is administered for a routine dental exam.

It is heavy-duty antipsychotic drugs prescribed by doctors like the one who told me last week that my son is “a young man with serious issues who has the potential to really hurt someone.”

It is specialized, lifelong care; it is the unrelenting question of what will happen when you die, of who will love your child as you do when you are gone.

It is therapies and medical scans and sleepless nights, bowel trouble and breath-holding and head-banging.  It is scars and screaming and broken marriages.

It is loving your child beyond measure, while watching the fascinating, normal world pass him by.

It is being afraid to take your son for a haircut.

Autism may have freed Rosie King to be herself, to escape “the tiny boxes with specific labels” she decries.  And that’s a wonderful thing.

Her “self” is pretty close to “normal,” though, compared to my son, or the tens of thousands of others living with classic autism. That very normalcy is what allows her to thrive.  The attention she receives is due in large part to her achievements as an “autistic” person, the label she wishes not to define her.

And that is what is troubling to me, why I didn’t enjoy the video as my friend thought I would.  Society sees her as an example of the limitless potential of those with autism, a happy autism success story.  But in reality, those stories are rare.

Rosie King’s success is no less valid because she is “high functioning,” but it creates confusion for the majority of people unfamiliar with the spectrum nature of the disorder, who will hear the word “autism” and remember the remarkable teenager who overcame it.  And that doesn’t happen very often with true autism.

One parent posted this comment on YouTube following the story:  “Thanks for sharing.  My 3.5 year old son is currently being assessed for autism…  The worst fear we have as parents is having him labeled for the rest of his life.  But this video has helped me alleviate some of that fear.  I know he may be labeled by some, but others will see what a smart, loving person he is.”

My son is smart and loving, too, despite the behaviors he is capable of.  Those who know him see that, too.  Whether or not he is “labeled” won’t change the impact, however, of the disorder that has claimed him, or the many others like him.  It doesn’t diminish the hideous consequences for those who cannot take the stage to tell their own stories.

I fear I offended my friend with my honest reply to his email, that while I appreciate his thinking of me, these kinds of stories are actually hard for parents to bear, the “why be normal?” mantra a kick in the teeth to those of us who’d give anything for “normal.” But if I want the truth as I know it to be understood, I have to be willing to share it, even when it is uncomfortable to do so.

Rosie King concluded her speech by declaring that she wouldn’t trade her autism for anything in the world.  My inability to say the same about my son’s autism makes me defensive sometimes, as though I have to assure people that I wouldn’t trade my son for anything; that even if I knew what was coming almost 23 years ago I’d do it all again, for the joy Daniel has brought me as my son.

But that doesn’t mean I wouldn’t trade his autism for just about anything.

I’d take normal in a heartbeat.

by Kristen -

Laugh at Your Own Risk

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People say I tell a good story.  I don’t know whether that’s true or not, but raising a child with autism certainly provides a lot of material.

The story lately concerns Daniel’s obsession with beverages: his, mine, yours — anyone’s.  Even the old lady’s at McDonald’s.

It began over a year ago with him snatching staff members’ sodas, at school and in his group home, and gulping them down as fast as possible.

Now any drink is fair game.  His beverage swiping has increased so dramatically that we can no longer take him to restaurants or even Starbucks, where, along with his lemon cake, Daniel will help himself to the coffee, latte or Frappuccino of any hapless patron in his path.

The last time I took him inside a McDonald’s was nine months ago, during a Sunday lunchtime.

We finished eating, and Daniel took our trays to the trash as usual, then suddenly bolted toward a family seated a few yards away.  Targeting the youngest child, a boy about six or seven, Daniel grabbed the cup from the kid’s hand and raised the straw to his mouth.

Horrified, I heard the boy’s father’s startled protest — “Hey, hey!” — as I struggled to retrieve the cup, which six-foot Daniel held high out of reach.  He polished the drink off in seconds.  Mission accomplished, he relinquished the cup as I grabbed him by the arm.

“I’m so sorry,” I said, turning to the stunned family behind me.  “My son is autistic, and doesn’t always behave the way I’d like him to.  I’ll get you another drink.”

The father, grasping the situation, told me not to worry, it was fine, no problem — all the kind, understanding words most people use when encountering the unusual behavior of a disabled person.

His compassion did little to soothe my own upset, though.  Dragging Daniel by the arm, I returned to the counter.  “I need another drink this size,” I told the clerk, holding up the boy’s cup and pulling two dollars from my wallet, keeping a grip on Daniel with the crook of my arm.

The clerk looked at me blankly, as though a soda had never before been ordered in the history of her McDonald’s employment.

“I need a drink this size,” I repeated urgently, holding the money across the counter.  She just stared at me with her mouth open, finally pulling a fresh cup from the stack behind her, then shaking her head when I tried to pay.  “I can’t take that,” she whispered, like I was offering her a bribe.

“Well, all right,” I replied, beyond caring whether I paid or not.  I grabbed the cup and pulled Daniel back to the victimized family.  The father tried to refuse the cup, but acquiesced when he saw my distress.  Apologizing profusely, I hustled Daniel toward the door.

But the party wasn’t over quite yet.

Nearing the exit, Daniel abruptly wrenched free, darting to a table occupied by a tiny, white-haired woman in her nineties, and what appeared to be her daughter, herself at least 75.  In a flash, he grabbed the older lady’s soda and bolted toward the bathrooms, guzzling the drink as he ran.

“He cannot be allowed to do that!” the daughter called stridently across the restaurant, over my own admonishments in Daniel’s direction.  “He cannot be allowed to do that!”

Desperate now, I called to the woman as I rushed past, “I’m sorry, he has autism — ”

“Yes, I realize that,” she called after me.  “But he cannot be allowed to get away with that!”

Neighboring customers cast wary glances our way as I snatched the now-empty cup from Daniel’s hand and turned back to his latest casualties.

“I’ll get you another drink,” I told the woman, “after I get him in the car.”  Before she could respond I dragged Daniel out the door and into the backseat of my Jeep, rebuking him incoherently across the parking lot.  “You stay right here, do you understand me?”  I hit the lock on my key fob and ran back inside.

Still clutching the original two dollars, I approached the women’s table, where the daughter had, apparently, undergone a change of heart.

“It’s ok,” she said indulgently, waving off the money I offered.  “It’s ok.  It’s ok.”

But I’d passed my stress threshold by then.

“It’s not ok!” I cried, verging on hysteria.  I tossed the money on the table in front of her.  “It’s not ok!  It’s never going to be ok, so please, stop saying that word!”

*****

Telling the story in the weeks to come, I was able to laugh along with my audience at the whole preposterous scenario.  It was a relief to laugh about it, after the fact.

But that incident underscored how parenting this child, how living for years through these events, has shaped my attitude and behavior, just as autism shapes Daniel’s.

I was telling a family member about my ordeal a few days after it happened, still shaken, mourning my son’s ever-shrinking world, and the disability that had robbed us of sharing even a meal together at McDonald’s.

She was already chuckling as I reached the epilogue: driving from the restaurant, disgraced; me sobbing in hopeless futility while Daniel, already focused on his next request, asked repeatedly for Starbucks.  I’m ashamed to admit how I screamed at him, again and again, as we drove back to his group home, another visit ruined by this hideous, inscrutable disorder, and my dismal collapse under its strain.

“It’s actually not that funny,” I said, annoyed by her failure to see the larger, more devastating picture.  “This is a pretty big problem for us right now.”

“Well, I’m sorry, Kristen,” she told me, giggling.  “But I just have to laugh at that one.”

I said nothing more.  But that family member topped my shit list for months to come.

And that is my problem.

All my friends in the special-needs community have experienced these episodes, multiple times, surviving them only by recognizing and rolling with their absurdity.  Better to laugh than to cry, right?

There are times when I can’t laugh, though, when the ramifications of Daniel’s behaviors outweigh their hilarity, when idiosyncrasies we once found quaint now impinge so dramatically on his chance to live even the semblance of a normal life.

But is it reasonable to expect those who aren’t living this to truly understand, to intuit the difference between a “funny” ordeal, and that one, final episode that breaks me?  Do I have the right to dictate their reactions, when they are patient enough to listen at all, to commiserate with the difficult parts of my life that have no real bearing on their own?

This is my worry to struggle through, as best I can, while the rest of the world struggles through their own.  Months of resentment later, I recognize that it is my problem, my failing, to ask those around me to view my experience through a lens that is mine alone.

I suppose it is better just to laugh.

But only when I say so.