Category Archives: anxiety

In Search of the Savant

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HBO just produced an excellent biopic about Temple Grandin starring Claire Danes.  Grandin is a professor of Animal husbandry at the University of Colorado and has made name for herself for her innovative designs for humane slaughterhouses.  At first glance that might seem like an oxymoron, but her premise is that if we are going to raise animals for food, we need to treat them with respect and make their lives as pleasant as possible right up to the moment, as she says, “they become meat.”  Grandin’s designs come out of her unique empathy for animals and her ability to understand their visual and sensory perspectives, and she credits her ability to do this to her autism.  HBO’s film portrays key moments in Grandin’s life with remarkable clarity, not allowing the extraneous details of her childhood and family life infringe unnecessarily upon the heart of the story, which is the discovery and nurturing of Grandin’s gift for thinking in pictures and translating that skill into workable solutions for real-lfe problems.  Her voluminous photographic memory permits her to draw on virtually every single image she has ever encountered, and to process that information into something useful to her, and often, but not always, others.  She has documented her life well in several books, and she lectures far and wide at autism conferences, doing her best to impress upon families, teachers, doctors and researchers the importance of cutting through the sensory static and literal translations that can nag at the autistic mind.  Several years ago she was profiled in The New Yorker for her work designing the slaughterhouses, and I carried it around with me for months as an example at meetings and support groups, saying “this is what I want for our children with autism, for it to be both essential and secondary to who they are.”  Or as the movie’s tag line goes, “different but not less.”  Temple Grandin is extraordinary in so many ways, and she’s as energetic and industrious in pursuing the interests that drive her as well as the obstacles that autism throws up in front of her.  She can’t stand being touched by people so she devised a hugging machine that fulfills her sensory need for direct pressure; she has a sensitive digestive system and texture issues, so she eats lots of yogurt and Jell-O.  She is a fascinating mix of rigid and adaptive.

I hope that Grandin’s story will supplant the Rain Man imagery attached to autism even though I embrace the glamour and intrigue that comes with the concept of a savant as portrayed by Dustin Hoffman in that film.  It is impossible to say whether the person in that story would have benefitted from the kind of education that Grandin did.  There is no denying that some people are more hobbled by their autism than others, and that the gifts exhibited by some are more striking than others.

By the book, a savant is someone who is an expert, and in even today some append the term idiot savant to those who have dazzling gifts accompanied by startling deficits in other realms.  Many parents with children on the autism spectrum have had the maddening discussion with people who simply must know if their child is a math whiz, a brilliant musician or an organizational genius; I keep waiting for someone to ask about x-ray vision.  There should be a way to have that conversation without putting people in a position to justify the disability.  What the HBO version of Grandin’s story ignited in me is the realization that we all hope for an inner savant, in our children and in ourselves, and the beauty of Temple is that she has found a place where her inner world and the outer world that so confounds her can merge.

I understand that autism can manifest itself in ways that can be unsettling, disruptive and painful, but it takes only a small leap to see the universality of Temple Grandin’s journey.  Anyone trying to get a job, applying to college or thinking of a career change asks themselves the same question – what do I do well?  What is my destiny?  Why am I here?  Does anyone out there see the real me?  Some people go though their lives not knowing for sure if they found their niche.  Autism writes that problem on the wall in stark relief, and in that process presents some of us with a niche that finds us.

And, to extrapolate even further, it occurs to me that greatest moments in time are populated with people who nurtured extraordinary gifts in tandem with staggering weaknesses.  There is little room for mediocrity on the lists of Nobel, Pulitzer and in the annals of History.  And yet we strive for children who fit in, for people who meet the established standard of achievement, for uniformity and acquiescence.  To take a small but colorful sample, and because I have just finished reading the real-life potboiler Game Change, I cannot help but think of all of the politicians who are brilliant strategists and personal goofballs.  Bill Clinton is nothing if not a political savant, a Rhodes Scholar who claimed he never inhaled pot, and he joins a group of folks both brilliant and crazy in similar fashion:  Gary Hart (smart enough to change his name but not to stay off the Monkey Business?), Eliot Sptizer (pimp buster and escort service client), John Edwards (populist hero with the Armani labels ripped out of his suit), Mark Sanford (he tried to give back the stimulus money and he gave his wife half a bike for her birthday).  These people are almost autistic in reverse – social skills savants with a startling deficit in linear thinking.  I’m being flip, I know, but my point is that we take great pleasure in parsing the strengths and weaknesses of our public figures, so why aren’t we better at identifying the same things in our kids?  There are parts of autism that need to be managed, even fixed, but what we really need to do is mine the brilliance, harness the energy, bring more tools to the table that allow people with hidden gifts to find them, even if, for some of them, in the end, it just means ending some of their frustration and giving them some peace and happiness in a world that mystifies them.

Cracked Windshields (2007)

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Both of our windshields are cracked.  Each car dinged on separate journeys, the line making its way across in the cold and dark, a silver thread delineating a muted mountain scape, meandering across just below the line of sight we use when we drive.

My ding happened the night before I visited Melmark that November, and my companion looked at it and said you’d better get that fixed, it will spider and spread.  Noting the other ding on my side of the glass, I said, I am not in a big hurry – that one has been there since June 2005.  But exposure to the cold and snow of a night outside the garage in the snows of Vermont took the November crack and stretched it across the glass, to the point that I spent the hours travelling south to Rutland waiting for it to split wide open.  I trained my eye on the spot where it stopped, waiting for it to continue to the edge where I imagined a snap and a rupture on Route 107.  My eyes darted back and forth, eye in the crack on the left and following the churning white river on the right.  It is an interesting river, rocky and changeable, winding its way through the muted colors of the sloping green mountains, now more gray and black than green.  Aside from the occasional red barn, the whole world seems is in shades of gray, the mountaintops getting a sprinkling of sugar snow that we see as rain.  With each swipe of the wipers I wince, waiting for the silver line to extend and breach.

I annoyed myself by giving into the metaphor created by the fissure.  They tension, the duality, the precarious holding together of everything and still all of it as invisible, as transparent as glass.  Do I only imagine that a break is imminent or is it simply a part of life occasionally in need of attention and repair.  The tiny leak in the front living room window, the dead car battery, the dual cracked glass, do they are they cries for help or simply a life in need of routine maintenance.

He is treating me delicately; careful not to snap or blame, qualifying each observed problem with a judicious remark that it is no one’s fault, and I wonder if he observes the fault lines in me and knows that my internal plates shift easily now.  I am as tentative with myself as he is; confidence is fleeting, patience is hard won, joy almost non-existent, tears the most accessible.  All of the ingredients of happiness are there but they are frozen and refuse to mix and become the whole person for more than a moment or two.

I see the same suspended animation in him, too, (his glass cracked last week and he has driven to work today with his own silver fissure just below his eyes on the glass).  We do not discuss it but only hint at the cautious relief that the boy appears moderately stable on this Christmas vacation.  We watch him as a sailor watches a changeable sea, wondering how long the calm will last, knowing that the waters ahead are unlike any we have sailed before.  How to plan for the unplannable, how to respond to the lightning fissures of the autistic mind, how to stay poised for those and still respond to the vagaries of adolescence and anxiety that still form the other two. Sometimes it feels like we are fighting a war on three fronts and can barely resist the urge to run up the white flag – but then what?  There is no surrender beyond sleep and so we take that and hope that when we wake there will be a smile to greet us.

Tell Me a Story About When You Were a Little Girl

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Many nights after we read together, my youngest child will say sleepily, “Tell me a story about when you were a little girl – one that you have never told me before.”   Sometimes I am hard  pressed to come up with a new one, but most times I amazed at how many events I can conjure up – many of them laughably short (“One time my father’s friend George helped us plant corn in our backyard – it grew but the ears were not big enough to eat. The end.”) but still enough to satisfy him.  I know that this is a ploy to keep me in his room long enough for him to fall asleep, and so I talk. . .

When I was small, probably four or five, I moved from the nursery next to my parent’s bedroom on the second floor of our house up to the third floor where the rest of my sisters slept.  Mom turned the nursery into her office, where I spent just as much time playing under her desk as I had playing there when it was my room.  They’d converted the third floor from an attic to bedrooms for their growing family.  There was one small bedroom with a door – a nod to my eldest sister, by then off at college – a larger dormitory room with four beds and then a third bedroom with a double bed through an archway opening off of that.  By the time I moved upstairs, people had shuffled around a bit and the large dormitory room was left to me and my sister B.  It was a sizable linoleum tiled room with a bank of floor to ceiling windows dormered out of the roof.  The windows looked out of the rear of the house and over the rest of the block and the neighborhood down the 11th Street hill.  From it I could see the roof of the little white house next door and the house beyond it, a fabulous, magical Victorian on the corner belonging to the W’s.  Painted a deep gray blue with white trim, I would sit for hours trying to imagine what was behind those gingerbread trimmed windows.  The W. children were all older than me, so my siblings had all been in the house, but by the time I was intereted, all of them had moved on and there was no reason to visit anymore.

The third floor windows opened on long, grooved wooden tracks, which created lovely breezes in summer but also made them rattle in the winter wind.  The train whistles that wafted through them in the night echoed loneliness and adventure, depending on my mood, but the bottom line was that those windows, so full of possibilities in daylight, scared me to death at night.  I felt exposed and far removed from all that was safe.  I wanted to leave the stairwell light on, which drove my sister crazy.  She couldn’t sleep with it; I couldn’t sleep without it.

 “You’re such a baby,” she said.  She was right about that.  I alternately relished and detested my place as the youngest in the family.  Though there is no question that there are many perks to being the last of many children, the cumulative weight of the experiences of the ten who came before me is not a simple burden to bear.  Being spoiled is not the same as being included, and being allowed to play does not teach you to play well or fairly.  Still, all of it was tempered in some way by love and attention, and I am still learning the value of those details as I try to look back and look forward at the same time.

And so, ‘fraidy cat that I was, on many nights I would wait until my sister fell asleep – or until I thought she was asleep – and tiptoe down the squeakish linoleum steps across the soft carpet of the second floor hall in to my parents room at the opposite corner of the house.  There in the king-sized bed my parents would be sleeping with their backs to each other, and I would scramble up from the foot of the bed, across the white coverlet that smelled of bleach to nestle in the valley between them.  I never recall them waking up and shooing me back upstairs, though I am sure there were times that they did, but I do remember bemused conversations in the morning about how I appeared there.

 Some mornings I would lay in their bed and watch my father as he shaved in the bathroom while the morning news was on the television.  There was a local voiceover guy on KWWL who bellowed “Good morning everybody!”  It made a good day a forgone conclusion.  And then came Captain Kangaroo, and Dad, in boxers and shaving cream, would come out and dance next to the television with dancing bear.  It was a magic moment.  Then he would come over and kiss me and I would swoon to the sharp soapy smell of shaving cream. Some times he would take the blade out of the razor and let me imitate him by putting shaving cream on my own face and swiping it off.

On other nights, it was not so much a desire to snuggle that sent me downstairs as abject terror.  I had – and still have – a recurring nightmare that was so real to me that it migrated into my awakened state.  There is a black rock, large and glistening, moving slowly and inexorably toward me.  Everything depends on my keeping that monolith from moving another inch, and yet, no matter how hard I try, it progresses, threatening to crush me in its path.  I remember scurrying to my mom’s side of the bed and shaking her shoulder, telling her in desperate whispers that I needed her help to stop the big, dark rock.   I was tiny enough that, standing up, my face was even with hers on her pillow and I had to reach up to rouse her; she was understandably  groggy and confused, but would cup her smooth dry palm around my check and chin and tell me to climb in and say my prayers and that my guardian angel would come and help me.  I didn’t want my guardian angel; I wanted her, my mother, the person who knew everything and could do anything.

I never turned to Dad at such moments, though I counted on him for other things.  I knew he would love me no matter what; I knew he would never ask more of me than I could give, I knew that the worlds we lived in were somehow different and the same.  I surmise now that he was ruled by a strange mix of fear and obliviousness and that my own greatest fear is sharing his oblivion, of not knowing and conquering my own demons.  My demons are his; my weapons for fighting them are hers, and so there is a battle royal in my head most every day.  And when I lay next to my boy and share my stories, I know that I do have a guardian angel and that she is winning.

The Autism Beat – The Flip Side

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Well, after making it sound like I live in a war zone I really should say why I love what autism has brought to my life.  Years ago, when I had an inkling that my life as a parent would be somewhat different than I expected, I plopped myself down at a friend’s kitchen table, and said “I don’t want this to change me; I don’t want to become angry; I don’t want to become the kind of parent that other parents avoid.”  Well of course it did change me and there are moments when I am angry and there are parents who avoid me, but I know all of that would have  happened anyway, regardless of whether I had a special child or not.

But what I didn’t know was that my life would have more texture and incidental joy than I could ever imagine.  That my child brings as much joy to others as we give love to him, that for every unexpected thing he does we learn something unexpected about ourselves.  We learned that it is impossible to parent any two children in the same way, that consistency is not about rules but about stability.  That believing what you say is just an important as the words you are saying.  That children often teach each other better than adults teach children, and that there are some children you can parent instinctively and other children that you have to seek help to learn to parent them well.  I have been quicker to understand and slower to judge, but less tolerant of those who might be quick to presume they understand me.

I learned to think in pictures, that emotions are a language unto themselves, that I can listen and speak with my eyes, and the practical value of being able to memorize dialogue from movies and TV.  I’ve learned the hidden language of touch, and that each person speaks it differently.  I’ve had spoken conversations for hours and gotten nowhere; I’ve made months of progress in a few moments of holding hands.  The two most important things in life are sleep and a sense of humor, followed closely by coffee and the internet.  With these things, I have found ways to help my family, stay connected with people I love, and found my way back to being the person I always hoped I could be.

When I look out from my life at the lives of others, I don’t see people who have it better than me – I see some people who think they have it better than me.  Everywhere I turn, people are still having mid-life crises, still worrying about their kids, still dealing with their parents (living or dead), still searching for something.  Sometimes I think people manufacture problems out of sheer boredom.  So, even as I struggle to create balance in my life, I am acutely aware of what I have and the bounty of my blessings.  Autism has given me the freedom to do what I think it right because there is no map for this life – I looked everywhere and I asked everyone and nobody knows.  That’s the gift:  the challenge of unraveling the mystery, of being able to write about it, of finding those marvelous people who speak our languages and who are on a similar journey, and who are laughing all the way with us.

The Autism Beat – Living with Improvised Explosive Devices

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A while back, someone sent me a link to an article that said that mother’s of kids with autism have the same type of stress as combat veterans.  This is not news, but it’s nice to have this kind of twisted validation.  I showed it to my husband, and he laughed and said “No kidding, we live with an IED.”  Exactly.  It’s the perfect illustration of what living with autism is like – you live under the same roof as an Improvised Explosive Device.  Just walking past – even a conversation with another person - can cause a freakout.  It’s like those phantom light switches that don’t turn anything on – some unsuspecting soul in China flips a switch and your child ignites.

To be fair, there are also parallels with living with teenagers, but with teens you can bet that eventually they will just give up and go to their room, or – better yet – stop speaking to you.  With just about any typical child, you can win the occasional argument, but that is not true with autistic people – if you decide that you are going to win they raise the stakes so high you have to rewrite the concept of what winning means- for you.  In our family we have dubbed this the Pizza Kid rationale.  Several years ago an autistic teen left his grandparent’s house and hid in the woods for five days because they had refused to have pizza for dinner.  Five days. He was never lost – he watched people look for him while he hid, and finally, finally got hungry enough that he didn’t have the strength to elude them any more.  You have to admire him for refusing to lose, but when it’s your own family, and for their own safety, you still can’t let them gain control.  So you barter – it’s really the only thing that works with anyone, but you have to be much more transparent in your motives because to people with autism it’s not about winning – it’s about keeping their world the way they need it to be.  Perhaps what is most unnerving of all is the randomness of it - the improvised part – what is crucial to them one day might not matter in the least on the next.  They need to control everything if they are going to survive, and you are the one who can provide the order they crave, or disrupt it.  So it has to boil down to life via contract – I will trade you this for that.  And even then there are times when they are so freaked out by the vagaries of life – bickering siblings, changes in schedule, bad weather – that they can’t even cut a deal, and the house of cards collapses - BOOM!

But there is a silver lining to this thundercloud.  You learn a lot about yourself and a lot about what motivates people of all abilities.  You learn the power of your own fear and the power of someone else’s, and that managing fear – yours, their, everyone else’s - is what 99% of your struggles with autism amount to. If you can find ways to keep either one of you from being afraid, of the world, of uncertainty, of each other, eventually, hopefully, you can put the flack jackets away.

The day after I drafted this essay the New York Times ran a front page story about a boy with high functioning autism who rode the subway for eleven days because he didn’t want anyone to yell at him.  This is not a closed topic.

Who knew heaven was in South Dakota?

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Leave it to Pixar to trigger anxiety. The visually stunning style and sparse dialogue of Up turns out to have had a profound impact on my visual learner – to the point that Carl and his Ellie have turned into a giant metaphor for loss and death that has Our Boy covering every calendar in sight in hopes that he can stop the march of time. He keeps trying to delete the calendar off of my iPod and insists that there must be a way for us to get back to 2001 – if asked why he chooses to go back to that specific year he will not answer. I am trying to avoid putting my own spin on that one. Any four digit number prompts the query “is that a year?” in hopes that he can somehow manipulate the calendar to suit his needs. He expresses it quite frankly: “I do not want to grow up and die and go to heaven; I do not want all of the people dead and for the dinosaurs to take over the world.” Apparently there’s a little Jurassic Park creeping in there, too.

As luck (don’t ask which kind) would have it we had a visit with a psychiatrist scheduled – not for this purpose but to help us better define the line between adolescence and autism – you’d be surprised how fuzzy that one is. Still, based on the usual performance at appointments of any kind, I did not have high hopes for this one; standard operating procedure for any doctor visit is laying down and going to sleep. This is Our Boy’s response to stress and you have to give him credit – it works. He has fallen into a dead sleep at Fenway Park and at any number of action movies. Total system shutdown.

But this time it turned out to be different. In preparation for the visit I told him that this doctor might be able to help him with what he calls his “worried heart.” The tale of Ellie and Carl had resurrected, so to speak, Our Boy’s own experiences with death, specifically the loss of both his own grandmothers and a neighborhood family that lost its grandmother two summers ago. Nana was a matriarch, a fixture at neighborhood parties with acerbic wit and a Tanqueray martini. She had a gravelly voice and a vast array of opinions; she taught her grandchildren to cook and play poker. Her late husband shared a name with Our Boy and thus she always and a soft spot for him and spoke very kindly to him, but she was memorable by any standards, particularly since his own grandmothers had lived far away and been less a part of day to day life.

Clearly, the prospect of understanding death and possible time travel made this an appointment worth staying awake for. Dr. J turned out be a lovely person with an easy way of speaking to children with communication issues – no big surprise since she is at the top of her field by any standards, but I had been disappointed by people touted as experts before. Autism is a great equalizer in that regard – people who are accustomed to impressing impressionable people who measure success by counting the degrees on their walls carry no weight with the autistic unless, maybe, they can also operate a steam engine or recite prime numbers to 23 places.

But Dr. J got Our Boy to talk about his worries about “becoming a skeleton” and going to heaven (so far we have completely avoided hell and purgatory). She got him to admit that heaven might not be a bad place, and asked him to draw a picture of it. I wish I had asked for a copy but I will try to describe it. He drew two wavy lines at the top and bottom of the page (“clouds”) and three stick figures who had heart-shaped torsos with wings sprouting from them. The circular heads had halos and smiling faces, and the center figure was slightly above the other two. “It’s Nana and the two grandmothers!” I thought.

Dr. J pointed to the center angel, “Who’s this?”

“My neighbor Nana.” She pointed to the second figure and peered over her glasses at him but said nothing.

“That’s Teddy Roosevelt” he piped up, as if there could be no other answer. I started to speak but squelched it.

She tapped the third angel “And this one?”

“Abraham Lincoln! They are all in heaven together? I will meet them all in heaven?” Many of his declarations come in the form of questions.

Turns out that to Our Boy, heaven is a lot like Mount Rushmore. Which explains why I am always finding images of that monument on my iPod.

It’s an exercise in forensic media and life exposure: this is what happens when the autistic mind mixes the following ingredients: a younger brother who is always reading books about presidents, endless viewings of Night at the Museum movies, a 2005 visit to the Museum of Natural History, National Treasure Book of Secrets, Jurassic Park, an election year (lots of shots of the Lincoln Memorial on TV), Up, and multiple experiences with death.

So, I wonder what would happen if we were to thrown in North by Northwest and Field of Dreams?