Tag Archives: Autism and the Myth of the Person Alone (Qualitative Studies in Psychology)

The Joys and Terror of Motorcycle Bubbles

Posted on September 26, 2012 by | 17 comments

When I went to get my Master’s degree in Creative Writing my favorite class was one in which we spent the entire semester dissecting two paragraphs from Virginia Woolf’s A Room Of One’s Own.   We spent two weeks on ONE sentence!  This was bliss as I’d never completely understood the word before.  Pure bliss.  Needless to say, I was the only student in a class of about 25, who felt this way.  Everyone else grumbled and complained, spoke of their excruciating boredom, many even transferred out of the class.  I couldn’t understand their feelings.  What was NOT to like?

I’m a big fan of the highlighter, so it was with some amusement that I read a note from Emma’s teacher last night, “She enjoys highlighting words at school and this will also help to increase her ability to read sight word vocabulary…”  Her teacher had thoughtfully included an enormous neon yellow highlighter in her binder!  Love that.    If I had a photo of a random page in Douglas Biklen’s book – Autism and the Myth of the Person Alone I would insert it here as almost every page has notations and sentences highlighted.  Such as this one from the chapter, Reflections on Language – Lucy Blackman:  “Birthdays were happy, exciting, chaotic, and connectional with food – the ultimate source of pleasure – so excitement was a birthday party.   But excitement, terror and fury are very similar emotions, so I still scream “birthday party” when expectations are more than I can cope with.”

In Aspen, Colorado where we go several times a year, they have fireworks at the foot of Aspen Mountain on the Fourth of July and again on New Year’s Eve.  Emma both looks forward to the beautiful display and is terrified by the sound they make.  She calls the fireworks “motorcycle bubbles” which is such a wonderfully descriptive phrasing of what she is seeing and hearing.  This idea that “excitement, terror and fury are similar emotions” is not something I’d considered before.  While walking the dogs on the ranch road with Emma, who has then (seemingly) randomly said “motorcycle bubbles”, I’m left wondering why she would say this.  Now I question whether her fear of dogs is similar to the terror/excitement she experiences from the fire works display.   She loves sitting in our neighbor’s house protected from the loud booming sounds, while still being able to see the beautiful colors of light raining down on to the mountain and town below.

Could this also be why she links rain to “motorcycle bubbles”?  Is rain equated with an electrical storm or the “raining” of lights during a firework display?  I can, literally, become lost in this kind of thinking.  I find it fascinating and exciting.  Like Virginia Woolf, whose writing I happen to be a fan of, Emma uses such disparate and surprising words to describe things.  I am reminded of the German word for “skyscraper”, the literal translation, I believe, is “cloud scratcher”.  How fantastic is that?  It’s beautifully descriptive, even poetic.

One of my favorite Cloud Scratchers – The Chrysler Building 

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Finding That Sticky, Messy Area Between Perfection and Despair

Posted on September 21, 2012 by | 24 comments

“Compare Emma to Emma.  Don’t ever compare her to another child.”  This was said to me years ago by someone whose name and face elude me.  I was reminded of their suggestion this morning as I rode the subway to my studio and read the chapter by Lucy Blackman from Douglas Biklen’s terrific, must-read book, Autism and the Myth of the Person Alone  – “That is  best illustrated by asking each reader to describe the cultural or emotional characteristics of their own sex, whether man or woman, without any reference to the opposite, not even by implication, as if you were completely unaware that there is another set of options available.”

As the subway careened along beneath the streets of Manhattan, I reflected on this idea of not comparing Emma to anyone else or even to an abstract idea of anyone else.  What if I didn’t compare her at all?   “…without any reference to the opposite, not even by implication…”  What if I saw Emma purely as Emma?  “..as if you were completely unaware that there is another set of options available.”  What if I pushed out of my mind all those evaluations, the reams of “reports” the specialist’s conclusions, the pages and pages of “information” gathered over the last eight years?  What if all of it, every last word was meaningless?  What if I emptied our file cabinet of all that and started anew?

We live in a culture of comparing.  We look to our neighbor and envy their garden or, as happens in Manhattan, how many square feet their apartment is. We salivate over other’s imagined life, we covet that which we do not have and may never have, we pore over the lugubrious details of fallen celebrities and the train wreck of their lives, we gawk at the photos of dimpled hips, bellies, thighs occupying pages upon pages in magazines we may never purchase while in line at the supermarket, relieved that we are not the only ones whose bodies are not the chiseled, polished, perfection obtained through that impossible combination of genetics and a willingness to give over hours of our lives to a gym.  Yet we still feel embarrassment and shame when we go to the beach and uncover ourselves.

I spent a great many years perfecting just this sort of thinking.  I spent far too many years feeling alternately “less than” and “better than”.  Oddly there was equal measure of shame in both and yet I couldn’t figure out how to extricate myself.  It was one or the other, that sticky, messy area between those two points was much harder to occupy.  But it is that area I long to find my place in.  It is exactly that middle ground I now find myself reaching for.  “…as if you were completely unaware that there is another set of options available.”  That is what I strive for, when I think about and interact with Emma, but also in every area of my life.

“Compare and despair” is something I have heard people say.  I can illustrate this saying with countless examples from my life and yet, even now, knowing what I know, the temptation to compare is seductive.  How does it serve me?  This is the question I know to ask.  And I have the answer to this.  It doesn’t, but it is a habit.  Thankfully I am learning to stop myself when I catch myself comparing.  What I am coming to realize is, comparing is my knee jerk response to stress.  It is where I go when I’m tired.  It’s my default setting for when I’m overwhelmed, hungry, sad or just confused.  Repetition is how we acquire skill.  Repetition is how we undo learned behavior.  When I compare Emma to Emma I see tremendous progress, I see possibilities, I see limitlessness, I see the beauty in the small steps taken, I see a kind of poetry in her growth.  Challenge becomes subjective, goals are no longer solid lines but instead shimmery bands of light, something one moves in and out of, no longer a mountain to climb, but rather a place to visit and then move on.

How do I stop comparing my child?  By seeing her through a lens of wonder and curiosity.  When I am able to accomplish this, I have found true bliss.  A blissfulness Emma innately occupies and patiently awaits me.

Emma running through sprinklers outside the Museum of Natural History

Architectural beauty – a building in Manhattan
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It’s My Birthday and I’ll Laugh if I Want To

Posted on August 20, 2012 by | 29 comments

Saturday was my birthday.  I’m 52.  Or as my twelve-year-old son said to his younger cousin last night, “Do you understand how old she is?”  A look of confusion lingered on his cousin’s face.  Then, apparently tiring of her lack of response, Nic said in a grave tone, “She’s fifty-two.” There was a moment of silence and then to be sure he’d left no room for error he added, “Fifty two years old.”   His cousin looked at me with raised eyebrows and what I imagined to be a new-found appreciation or maybe it was horror, it’s impossible to know what an eight year old, having been given this sort of news, might think.

I figure I’m at the halfway point, though my husband would say I’m being unrealistic as he fully intends to live… forever.  Yeah, you read that right.  As in eternity.  I’m not as optimistic.  However, I like the idea of having reached the halfway mark, forget that I felt I was at the halfway point last year and the year before and the year before that too…  But let’s just say I’m right, that would mean I’ve got another 52 years ahead of me.  And I don’t know about you, but I fully intend to make good use of them!  Because the first 35 or so I kind of made a mess of.  There’s good reason I have a 12-year-old and 10-year-old when many of my same age friends have children graduating from high school and college.  Don’t get me wrong, I’m grateful for my past, I’ve learned a great deal.  I just wouldn’t want to do any of it over again.  I really like being 52.  I like being where I now find myself.  But mostly I really like my life.  

Birthdays are a time of celebration, but more than anything they’re a milestone of how far we’ve come.  At least that’s how I like to think of them.  I’ve come far in 52 years, but this last year has been more significant than any other year to date.  It has been within the last year that I have completely changed how I see my daughter.  And that change has unexpectedly altered my view of the world and my life.  I don’t know that any other single thing has changed my thinking and views of life and the world as quickly, dramatically or completely.  There have certainly been milestones – getting help for my eating disorder, stopping my bulimia and anorexia and getting sober are two examples of significant change.  And while the actual stopping of an action happens in a single moment, real change occurs over many such moments, repeated over and over.  The larger changes that take place as a result of those repeated actions or inactions can take years to recognize.  It is, as they say, a slow recovery.

My introduction into the world Autistics inhabit and talk about, was swift, abrupt and in many ways, more life altering than anything I’ve ever experienced.   I am still reeling from the force with which this knowledge has transformed my life and the lives of my immediate family.  As a result, I have never been so happy.  I have never felt so hopeful.  I have never been so sure we are on the right path.  I have never enjoyed my family as much as I do now.  Most surprisingly, my happiness is not because Emma has become a “normal” child.  On the contrary, my happiness is, in large part, because she is not.  I view her with wonder, without judgement and an open mind.  I have learned to see her as neurologically different, not wrong or broken or in need of fixing.

I no longer speak of Emma as though she cannot hear me or understand me.  When she doesn’t answer or walks away when I’m talking to her I no longer assume she’s not interested in what I have to say.  I have learned to examine all of my assumptions.  I have learned to question everything, and I mean literally everything I think or think I know.  At my friend Ib’s urging I’ve begun reading Autism and the Myth of the Person Alone by Douglas Biklen.  This book, like so many that I’ve read in recent months, throws everything we neurotypicals think and say about autism and Autistics out the window.  Judy Endow, just posted a terrific piece entitled, Seeing Beyond My Autism Diagnosis.  She talks about the lens through which NTs view Autistics and writes:  “Stereotypical views of autism are based on the neurotypical (NT) assignment of “truth” as they look at us.”

One of the greatest gifts I’ve received this past year is the joy that has come with  questioning my “truth” when it comes to Emma.  In questioning it I have found my sense of humor.  It never entirely left me, more like it had been tamped down by stress and worry.  To laugh, to really feel the absurdity of situations that used to cause me tremendous upset and concern, to feel the carefree pleasure of being with my family and enjoying them…  this is the life I had always hoped for, but felt would never be mine.

Yeah.  I turned fifty-two on Saturday and I’ve never been happier.

The vanilla cake with raspberry icing Em and I made.  Nic and Emma decorated it by writing everyone’s name on it.  And yes, it was delicious!

Beautiful Em wearing one of her pretty dresses

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