He does it again. Stop. Rewind. Play. And one more time. On the fourth pass, Cornelia whispers, “It’s not ‘juice.’ ” I barely hear her. “What?” “It’s not ‘juice.’ It’s ‘just’ . . . ‘just your voice’!”
I grab Owen by the shoulders. “Just your voice! Is that what you’re saying?!”
He looks right at me, our first real eye contact in a year. “Juicervose! Juicervose! Juicervose!”
“Juicervose!” — as Cornelia, tears beginning to fall, whispers softly, “Thank God, he’s in there.”
– – – – – –
Cornelia starts to think about what to do now. It’s like he peeked out from some vast underground and then vanished. He’s done this before, but never quite like this. “How on earth,” she says almost to herself, “do you get back in there?”
I feel she’s asking me. She has been the one lifting the burden each day, driving him to therapists and schools, rocking him to sleep as he thrashes at 3 a.m. I’m the one who tells stories, does voices, wears a propeller hat.
Her look says, “Find a way.”
– – – – – –
Owen gets this look where he raises his eyebrows and presses his face into the widest of smiles. He calls it “happy face.” He does it when he’s worried he might cry.
– – – — –
[image above links to (amazing) video]
– – – – – –
It’s as if Owen had let us in, just for an instant, to glimpse a mysterious grid growing inside him, a matrix on which he affixed items he saw each day that we might not even notice. And then he carefully aligned it to another one, standing parallel: The world of Disney.
– – – – – –
Time passes, pages turn. And then I see writing. On the next to last page of the sketchbook, there’s something. It’s his usual scrawl, the letters barely legible: “I Am the Protekter of Sidekicks.”
I flip to the last page. In the chicken scratch of a kindergartner is a single sentence: “No Sidekick Gets Left Behind.”
“What is a sidekick?” Cornelia asks him.
“A sidekick helps the hero fulfill his destiny,” he chirps. Rolls right off his tongue. A classical, elegant definition.
“Do you feel like a sidekick, Owie?” Cornelia asks him softly. Their eyes are aligned, just the two of them now, looking into each other, until he suddenly breaks into “happy face.”
“I am one!” he says. His voice is high and cheery, no sign of a quaver. “I am a sidekick.” The words come out flat, without affectation. But he compensates, giving them expression by nodding after every two syllables.
“And no . . . sidekick . . . gets left . . . behind.”
He starts giving sidekick identities to his classmates at Ivymount, so many of whom are heavily burdened — some with physical infirmities, and plenty of autistic kids with little speech. But they have qualities that he’s identifying — this one was loyal, that one gentle, another one silly in some lighthearted way that makes him laugh.
It’s often the supporting players in Disney fables who are more varied and vivid.
beautiful sidekicks all around us… and we’re missing it..
More than any other therapist, Griffin took to the “Disney therapy,” or more broadly, what might be called “affinity therapy,” that Cornelia and I, with Walt’s assistance, have been conducting for years in our home, and even more so recently.
As the session ends, Griffin pulls me aside. “Autistic kids like Owen are not supposed to do that,” he says. “This is getting weird in a very good way.”
– – – – – –
Lots of families run themselves into bankruptcy. We’ve spent about $90,000 a year on Owen. Actually, that’s not so much higher than the norm — autism organizations estimate that it costs about $60,000 a year to provide adequate educational, medical and therapeutic services to an autistic child. About half of that can go to school tuitions, often with some of the money coming from public funding.
And we are just one family. There are an estimated two million people with autism-spectrum disorders in the United States, more than 500,000 of whom are children. Beneath the oft-cited incidence rate of one in 88 children is a more startling one. Because of the five-to-one prevalence of the disorder in boys over girls, one in every 54 boys is affected, a number with few epidemiological precedents. Down syndrome, by comparison, occurs in one of every 691 children.
– – – – – –
“It’s not so much how he’s used the movies to help with academics,” Blattner says. “It’s how he’s used them to guide emotional growth, which, of course, is the bigger and more complex challenge.
”He is developing a version of “inner speech,” something that typical people develop as children to “think through” behavior and plan actions, the core cognitive processes of executive function, which are thought to be deficient in autistic people. Lately, Owen has let us in on it. At our prompting, he tells us how various sidekicks would solve his problems, quell his fears. He does it in the characters’ voices, seeming to channel insights that are otherwise inaccessible to him.
Griffin tells the group how he has recently channeled Rafiki’s voice on why change is so hard and how we manage it,
lessons/insight for 100% of humanity: bravery to change your mind ness
and Jiminy Cricket’s on the meaning of conscience and how to converse with that “voice in your head.”
self-talk – data that matters..
– – – – – –
But what draws kids like Owen to these movies is something even more elemental. Walt Disney told his early animators that the characters and the scenes should be so vivid and clear that they could be understood with the sound turned off. Inadvertently, this creates a dream portal for those who struggle with auditory processing, especially, in recent decades, when the films can be rewound and replayed many times.
isn’t this all of us? otherwise – why would war/suicide/et al be so high..
After the third viewing of a good movie, or a 10th viewing of a real favorite, you’ve had your fill. Many autistic people, though, can watch that favorite a hundred times and seemingly feel the same sensations as the first time. While they are soothed by the repetition, they may also be looking for new details and patterns in each viewing, so-called hypersystemizing, a theory that asserts that the repetitive urge underlies special abilities for some of those on the spectrum.
so much to learn via self-talk dancing with fractal ness… iterations.. smaller and smaller – is ginormous beautiful.. [we all need this – we’re missing people now… that we label.. when in fact.. they are the ones who can save us..]
Disney provided raw material, publicly available and ubiquitous, that Owen, with our help, built into a language and a tool kit. I’m sure, with enough creativity and energy, this can be done with any number of interests and disciplines. For some kids, their affinity is for train schedules; for others, it’s maps. While our household may not be typical, with a pair of writerly parents and a fixation on stories — all of which may have accentuated and amplified Owen’s native inclinations — we have no doubt that he shares a basic neurological architecture with people on the autism spectrum everywhere.
The challenge is how to make our example useful to other families and other kids, whatever their burning interest.
– – – – – –
We always knew there were other autism-spectrum kids who focused intently on Disney — we’d met several, after all, over the years. But by starting this club, Owen has drawn together a roomful of them.
this is a people experiment – finding your tribe.. everyday.. hastening equity.. and getting us back to us – what it means to be human and alive.. giving humanity/authenticity legitimacy…
The room gets quiet. It’s clear that many of these students have rarely, if ever, had their passion for Disney treated as something serious and meaningful.
probably 95% (at least) of people feel this way.. evidenced several places…Denise Pope‘s research is just one example.. 95% cheat as survival… to get through the things society is making us do.. and to get to the thing you can’t not do..
– – – – – –
Like a broken dam.
time\ing\ness.. the point of inflection.. if we just get the dance right… global equity – turning on a dime.
– – – – –
There’s a reason — a good-enough reason — that each autistic person has embraced a particular interest.
Find that reason, and you will find them,
hiding in there, and maybe get a glimpse of their underlying capacities.
…showing authentic interest will help them feel dignity and impel them to show you more, complete with maps and navigational tools that may help to guide their development, their growth. Revealed capability, in turn, may lead to a better understanding of what’s possible in the lives of many people who are challenged.
– – – – – –
For nearly a decade, Owen has been coming to see Griffin in this basement office, trying to decipher the subtle patterns of how people grow close to one another. That desire to connect has always been there as, the latest research indicates, it may be in all autistic people; their neurological barriers don’t kill the desire, even if it’s deeply submerged. And this is the way he still is — autism isn’t a spell that has been broken; it’s a way of being. That means the world will continue to be inhospitable to him, walking about, as he does, uncertain, missing cues, his heart exposed. But he has desperately wanted to connect, to feel his life, fully, and — using his movies and the improvised tool kit we helped him build — he’s finding his footing. For so many years, it was about us finding him, a search joined by Griffin and others. Now it was about him finding himself.
2 needs and a cure.. for all of us.. who’s to say who is more dis\ordered.. just because people appear normal.. we compulsorize school math/science et al.. we even criminalize those who question it.. so that we might have success.. yet things that matter – like how to listen to people.. how to connect.. those are assumed to be absorbed.. well.. they’re not.. ie: suicide/divorce/poverty/et al rates… no?
The song is called ‘Looking Through Your Eyes.’ ” He explains that he listens to the song every morning “to make sure I don’t forget to see the world through her eyes.”
imagine a world where 7 billion people believe it’s legal/legit to talk to themselves… every day.. to listen to their gut.. to replay/replay/replay – what matters most…
– – – – – –
“Because he breathes life into them. They only live in his imagination.”
Everything goes still. “What’s that mean, buddy?”
He purses his lips and smiles, chin out, as if he got caught in a game of chess. But maybe he wanted to. “It means the answers are inside of him,” he says.
“Then why did he need the gargoyles?”
“He needed to breathe life into them so he could talk to himself. It’s the only way he could find out who he was.”
nice/touching 45 min recap via Ron, Cornelia, Walt & Owen on radiolab sept 2014 – embedded with a well-rounded gathering of experts/insight:
24 min from experts – (including Temple Grandin): repetition of human action – with music to bind emotions to feelings, using movie as scaffold to make sense of complexity of life (Simon
26 min – Ron – instead of telling them what they need to know – follow their passion
28 min – expert – you can’t generalize. not the norm – so have a happy ending. (did review on Ron’s book)
30 min – people seem to believe that it’s dangerous for parents to have too much hope. we’re more concerned about false pessimism. – 900 hrs till he gave us eye contact – of rocking with him. – http://www.autismtreatmentcenter.org/
33 min – some say suicide rate in this area is so high because people get the feeling if they don’t have success stories – they aren’t trying hard enough
37 min – Owen takes a turn – 10th grade. moving into a bad place. he had been bullied – will burn your house down if you tell. so thought – i could tell Walt – but then i knew Walt would beat them up. and in disney – no heroes kill villains.
41 min – moving to life – living independently for ever
43 min – mogli to the man village – you stay with him on the path even if it’s a never ending path
book links to amazon – release april 1 2014
notes/highlights from book:
The video is shot the day before the moving van arrives, and we’re all still firmly ensconced in the land of normal. I never thought much about that word, how it’s one of those definitions by default, shaped not so much by what it is as what it’s not—a circle defined by everything outside of it
Before my father died of cancer at forty-six, he wrote a letter to my older brother and me imploring us to do “something worthwhile” with our lives. Journalism seemed to fit, opposing authority, searching for bits of truth,
There’s something about the way one area of challenge, a blockage, often creates compensatory skills somewhere else.
doctors—we try to make sure we aren’t just seeing what we want to see.
Today, in sunlight, he’s the hero of his imagination
I’d often play Prine’s song “Hello In There,” about reaching out to people who’d become invisible: Please don’t just pass ’em by and stare, As if you didn’t care, Say, “Hello in there.”
song—I’d follow their cue, wherever it led. Months along, they began to show me a few tiny glimpses of what was real in their lives
We draw stares. And sometimes it takes a while for folks to turn away. We’ve become experts on staring.
Beauty lies within
and loose your voice – the first two lines they notice Owen focuses on – how have we gotten to the point that we don’t hear things like that.. don’t take notice of them.. right in front of us
In the spring, the stories about him and other kids at his blighted high school won me the Pulitzer Prize. Those stories were, in essence, about beauty—as well as native intelligence and sensitivity—lying within, though these qualities are often hard to find and harder to measure, something we humans seem so anxious to do: to dole out credit and rewards
Readers were moved by the recognition of how hollow so many of our judgments are—something Cornelia and I began to slowly acknowledge around the time Eric, the Down syndrome kid, hugged us that day in Owen’s classroom
irony—Owen sees right through the bubble of reputation—and
had tried to throw pulitzer through window
For every why, suddenly there seems to be a why not. Nothing dramatic. We just go a little crazy, in a very conventional way: we start to undervalue our fears and over-appreciate our hopes
Denial and hope, of course, are cousins. Bring them together, you’ve got illusion
Squint a bit, and it looks a lot like friendship
The doctors and now the teachers call it “self-talk” and formally define it as “perseverative behavior”—a feature of autism and pervasive developmental disorders defined in the medical literature as the “repetition of a particular response, such as a word, phrase, or gesture, despite the absence or cessation of a stimulus, usually caused by a brain injury or other organic disorder.” Looking for ways to control it and reduce it, they recommend we limit the movies to an hour a day.
After “juicervose” and “bootylyzwitten,” we aren’t about to turn away from the screen. Though his pronunciations are slurry, the cadence swift and arrhythmic, we are ever trolling the verbal stream for a familiar word. Or even a sound.
john cage (silence) ness
Now she had a mission, especially after DC recommended her son be placed with kids who were either emotionally disturbed or retarded. She said he wasn’t either—that he seemed alert, even bright in a few areas, but didn’t learn the way most other kids learned. There was no school for him. So she built one, and they came: lots of kids with no place else to go
Link them all together, like so many buoys attached to a shared anchor, and, by 2012, they affected almost 20 percent of the population
his challenge isn’t simply to measure Owen’s underlying intelligence—but to discover it
Pattern recognition takes a bit of distance. Patterns are easily hidden in the noise of life, of preference and prejudice.
It’s like Owen had let us in, just for an instant, to glimpse a mysterious grid growing inside him, a matrix on which he affixed items he saw each day that we might not even notice
I’m talking to my son for the first time in five years. Or Iago is.
I’m an evil parrot talking to a Disney villain, and he’s talking back. Then, I hear a laugh, a joyful little laugh, like I have not heard in many years.
At three, his comprehension of spoken words collapsed. That’s clear from every test and, later, his own recollections. Listening to him now, it seems that as he watched each ninety-minute Disney movie, again and again, he was collecting and logging sounds and rhythms, multi-track—each one like pi, stretching to thousands of digits. Speech, of course, has its own subtle musicality; most of us, focusing on the words and their meanings, don’t hear it.
Though all of our words are scripted by others, we are literally communicating through these words and the stories they tell
Is this just a more complex, interactive version of echolalia, or are we really talking? Can’t say for sure where to draw that line. But I’m certain about one thing: the warmth passing between the characters in the movie—one Owen has watched a hundred times—now passes between us. I can feel it.
Owen, running about, reciting scenes in a public park, is as oblivious to what he looks like as he’s always been. It’s our view that’s changed—our view of him. There was reason to his rhyme
No, it isn’t the school. Disney Club seems to have added a class to its curriculum: MOVIE CREDIT READING AND COMPREHENSION. It’s actually independent study—Owen is self-directed, which we are fast realizing, seems…to be the only way he can learn
Play, stop, rewind, play, stop, rewind, frame by frame. The methodology is logical and deliberate. He doesn’t seem to want to do it while we are in the room,
We hear him say the name softly, almost reverently, repeating it a few times. And then other words, like assistant and associate, lighting, director, and producer. He seemed happy and focused, scrolling frames, calm and intensely engaged, with so many movies to choose from. Our only job is not to disturb him
I feel dots connecting around the words “supposed to.
He has no sense of the “supposed tos” because he can’t read all those looks, expressions of favor or disfavor, the ripple in the crowd, borne within each passing moment that builds into a life
Context blind? Suddenly we see him mastering a context that’s invisible to us.
But in those brief conversations—or through what Owen asks the nonspeaking animated characters walking to and fro—we catch a glimpse of an Atlantis he’s building under the sea. He’s not only learning to phoneticize words by reading the credits. He’s remembering the names, cataloguing them—those are five movies for Verna Felton—and creating a cross-referenced index in his head. When he meets characters, there is so very much to discuss
And, standing there, our eyes begin to adjust, to see what he sees
Disney is now a controlled substance
But that’s as far as self-directed passions are expressed at school. The production of the play was a special event; energies that are hard to integrate into the daily curriculum
Because that’s what happens when no one tells you about the moment the “special” kid arrives. How a whole extended family, top to bottom, gets changed by someone who stops the constant drumbeat of me and mine, who’s up, who’s down, the irresistible drama of bloodlines, birth orders, and familial politics. Why? Because the ways he’s different compels a minute-to-minute search, humanizing and heart-filling, for all the ways he’s not different. It’s us at our best
Owen, knowing these lyrics and feeling them in ways that remain mysterious, dances in song—arms akimbo, reaching, swinging—at the very center of a crazy celebration that he’s unleashed.
dang. if we would just listen.
It’s like a game of musical chairs, with the autistic-spectrum kids not able to hear when the music stops
Owen gets this look where he raises his eyebrows and presses his face into the widest of smiles. He calls it his “happy face.” He does it when he’s worried he might cry
It means, for the first time, he’s developing the ability to hide in plain sight. To pick his moment, dive into his secret world, resurface to do what’s asked of him, then dive deep again
Cornelia spends time in here, in his head—this child she carried—whispering to him. Now I’m in here, too.
It’s as though a one-way conversation—a monologue has just become dialogue
And he becomes a protector of the sidekicks, the supporting cast, demanding that none of them be left behind. That’s all. Not asking for the world, here—just don’t leave us behind
I’d always been fascinated by someone who mourned perpetually, probably because, around the time my father died, I saw Harold and Maude in which Ruth Gordon goes to strangers’ funerals as a way to stay in touch with the ephemera of life
Schmaltz. For the unaware, it generally means overly sentimental, with the best working definition, for a writer at least, coming from J. D. Salinger, who says, sentimentality—“the great enemy of writing”—means giving your characters “more love than God gives them.” It’s not just that, though, at least for nonfiction. It’s giving them more love than society gives them, because maybe to do so upends the order of things; namely, our surety in the ways we measure human value and some of us see ourselves, quite comfortably, as better than others.
His response is to embrace it, the pain of it, and be a protector of the discarded.
What choice, though, did we have, walking around as he does, without the protective skin of social instinct or acuity, his heart so utterly and perilously exposed. Exposed, yes, but beating in ways we suddenly can see
Instantaneously, he races across the pantheon of sidekicks and, for each of them, finds a match
The spectrum of complex human emotions is housed with the sidekicks.
Owen has become an aficionado. We can barely keep up. In the carpeted cavern downstairs, he seems to be developing a vocabulary, using the sidekicks, through which he can organize his emotions
He doesn’t care if it’s not a word. In his language, it now is
In September, on the day of Walt’s fifteenth birthday, he draws Aladdin and writes, “To the greatest brother I ever had.” By now, sketchbooks are piled high—hundreds of drawings—but this is the only hero he’s drawn, this one picture.
Those elephants really deserve it, don’t they?” “I don’t know—do they?
It has to do with how each perfectly arrayed note once scribbled by Mozart, Beethoven, Chopin—or infectious pop song celebrating love, hummed by all—is offered, faithfully, unflinchingly, by someone who must live so much of their life defined by some visible and enveloping imperfection. We all work so hard to present ourselves as perfect, win laurels, and rise above those who cannot. It is our nature but one we might rise above.
more john cage ness
This rises. His academic work falls. Aren’t music and math handled by the same part of the brain? It makes no sense. She shoves all the books back into his pack
of math and men ness
The recent growth comes from what parents and therapists noticed about autistic kids: that they were more socially available and interactive after they were squeezed, like Grandin and her machine, or spun, like a whirligig. Even after many studies, it’s not all that clear why this seems to be effective—just as it’s not completely clear, neurologically, why people feel certain ways after strenuous exercise—or why it seems to build underlying capacities for the senses to better integrate
I want to fix that, fix him, but lately Cornelia is saying, maybe we have to think more about just enjoying him for who he is and not trying to improve or repair him every minute of every day. It’s a difficult impulse for me to control. I want to fix everything, make it just so, make it right. But singing “Hakuna Matata” with him eases me and my corrective impulses.
That, after all, was what had been happening naturally and forcefully, day by day, year to year, inside our home: the judgments Cornelia and I once housed—widely accepted suppositions about those with so-called “intellectual disabilities”—were being dislodged, often against our will, and replaced with a much deeper understanding
Inner life. What IQ score would they give that, or the sidekicks concept? Huh? The world and its goddamn yardsticks
All those years ducking stares built in him a desire to go quietly about his business; get the job done without fanfare—a quality often seen in siblings of the disabled
One boy, wandering so often in solitude, compels us to furiously shape our world to meet his needs; the other, among a band of brothers, now taking their bows, demands to be challenged and shaped by the wide world, with all the judgments and dictates and uncontrollable forces we fear
I know, by now, not to interrupt the silence.
Right to the end, the supposed tos tug at her, like they do all of us
He’s running his own little home school in the basement. Wonder where he learns more—days with me or nights alone
suffocating ness – staying up all night.. since you weren’t free in the day
More than any other therapist, this psychologist takes hold of what, in essence, was a kind of “Disney therapy,” or more broadly, what might be called “affinity therapy,” that Cornelia and I, with Walt’s assistance, have been conducting for years in our home
when he was performing, he seemed totally alive and present
What struck me was, not only did Owen come alive, but Ron came alive in a way I hadn’t seen before, and the connection between them was electric. I noticed so much joy, intensity, spontaneity, laughter, and they seemed much more organically connected. The room crackled with sparks of delight.
And, in my chair, the cinematic and the real are colliding. I’ve spent the summer doing interviews from the “Today” show to Jon Stewart’s “The Daily Show” to Rush Limbaugh’s radio show promoting my book, The Way of the World. Its main character is a U.S. intelligence chief who furiously treks around the globe in an attempt to prevent weapons of mass destruction from falling into the hands of terrorists. Their oath of using fear to undermine civilization’s norms and create anarchy—to show our prized principles are matters of convenience, easily toppled—is identical to what Ledger’s character pronounces in the movie
And then this, to District Attorney Harvey Dent—a champion of law, society’s rule book to manage itself—who’s lying, mangled, in a hospital bed. Joker: Do I really look like a guy with a plan? You know what I am? I’m a dog chasing cars. I wouldn’t know what to do with one if I caught it! You know, I just, do things. The mob has plans, the cops have plans, and Gordon’s got plans. You know, they’re schemers. Schemers trying to control their worlds. I’m not a schemer. I try to show the schemers how pathetic, their attempts to control things really are…Introduce a little anarchy. Upset the established order, and everything becomes chaos. The next day, Sunday, I hear Owen recite this entire passage in a flawless mimic of Heath Ledger’s Joker. I’m stunned. I ask him to do it again, and bring Cornelia over to hear it. She hasn’t seen the movie, but the words are unmistakable in their impute—as is their connection to Owen’s life. We go out to the back patio where we can talk. “He might as well be talking to the bullies,” Cornelia says, outraged. “It’s horrifying.
Though I’m sure Owen will never use these words, one unanticipated use of traumatic adversity—started a year ago, now, on that morning in music class—is that these words can be taken off the list of ugly realities that might exert power over him as he ventures into the world.
His conclusion: too many hurts, up ahead, to risk the journey. His compass is way off, whipsawing from Heath Ledger and his curse-word-therapy game…to Mister Rogers.
Listen, my boy, knowledge and wisdom are the real power!” Owen exclaims as Merlin, in the voice of Karl Swensen. And then he keeps going. “Now, remember, lad, I turned you into a fish. Well, you have to think of that water like the future. It’s unknown until you swim in it. And the more you swim, the more you know. About both the deep waters and about yourself. So swim, boy, swim
And after ten minutes, I begin to realize that Owen has lived in an upside-down world, much more fully realized than we ever could have imagined. Now, we’re in it, too. Merlin is speaking with a depth and nuance that Owen has never—and maybe could never—manage. At least could never manage without Merlin. Could it be that a separate speech faculty has been developing within him that was unaffected by autism? Or, maybe, in response to how the autism blocked and rewired the normal neural pathways for speech development?
Studies in recent years indicate this inner speech may be impaired in autistic children, undermining, from early on, their executive functioning. In fact, when inner speech is artificially impaired in typical kids—something managed by disruptive noise or tapping—they perform on various problem-solving tests about the same as autistic children.
In the coming days, Dan sends links to recent papers mentioning the use of something called “inner speech” in the development of executive function—that
First theorized by an early twentieth-century Russian psychologist, Lev Vygotsky, it starts as the self-directed, out-loud speech of young children—verbalizing as they make their way—and is internalized in preschool years, as a way kids “think through” actions
most people don’t think it’s legal (or normal/acceptable) to think for themselves…
So many autistic kids memorize and recite scripts, there’s a widely used term—“scripting”—that is generally seen by therapists and psychologists as repetitive, nonfunctional behavior, something to be reduced and remediated
so you can improv\e
Certainly, we’ve done plenty of that, to help him control it in school and in public. But it appears that Owen, with our improvised support, has derived value in the scripting, itself, as a way—a seemingly successful way—to shape and develop this crucial inner speech
what if it’s there for all of us – and we need to rather – not beat/squelch/norm it out of us – what if Owen is more like 90% of us.. what if our assumed normal is what’s not
The insights are trenchant
At home, Cornelia and I call it a back-to-the-future moment. In some ways, she points out, we’re going back to the early role-playing days in the basement. Then, we had to stick to the script and find the right lines, on cue, to communicate. Now, it’s improv
At any given moment, when a challenge arises, we can ask Owen, “What would Rafiki say?” An internal dialogue, that he’s clearly been having for years, can now be taken and shaped by us.
The response, in Merlin’s voice, carries a tone of impatience bordering on anger: “You should never ask a wizard the source of his powers! It’s the surest way for him to lose them!
The hum and vibration of the car, passing landscape, closed windows muting sounds; not having to make eye contact, to read expression. The moving car has always been a sweet spot
sweet spot – echo chamber – ness
He and his friends make a movie about the sidekicks journey using traditional hand-drawn animation. It touches people and saves the world.
7 billion sidekicks.. a quiet revolution
The joy my brother finds in things that most people would roll their eyes, at has helped to let my family realize what is important to us
After years of working alone in the basement—compulsively perfecting his technique—Owen found a coach.
Maureen, beside me holding up one of his canvases, sees my attention has been drawn away, listening to the exchanges; to the way, in her lair, Owen is learning to manage his unruly senses, to harness them. She watches me watching it all, which I notice as I turn back. “They like him,” she says. “I think he likes being liked.” She nods. “I think he likes being an artist. It’s who he is. That’s what the girls see.
the little prince ness
The humility this is inducing among some very smart people notwithstanding, there’s palpable excitement about one area of powerful and growing consensus:
when challenged, the brain finds a way.
Science caught up with the moms, which is actually not all that uncommon, and now has its hottest lights on autism. Because autism is pervasive, it covers almost all of the brain, putting everything on display. There is clearly a connection between the way deficits in processing language may be caused by, or create, heightened capacities for pattern recognition and certain types of memory. Those three core functions—language processing, pattern recognition, and memory—can be difficult to probe and assess in the typical brain. But you can see the neuronal gears turn in the way those functions are heightened or diminished by autism, and the way the brain—challenged in this way—is busy discovering itself. Watching that teaches scientists what the brain is inherently capable of. Call it the discovery principle
But knowing these whys—why a person is the way they are—is of only modest value in a daily struggle that rests on what and how
If things worked as we hoped, the need for this constant exchange of information would diminish
he’d need to be able to engage competently with people who knew little about him and were not experts in directing his path or helping him discover himself.
For twenty-five years, Maureen has been mixing and matching teenage artists in this studio
Maureen whispers in his ear, “If you want them to come look at your work, you have go look at theirs.
norm—autism organizations estimate it costs about $60,000 a year to provide adequate educational and therapeutic services to an autistic child; about half of which, in terms of school tuitions, often comes these days from public funding
He’ll always test badly,” says Bill. “And that’ll…hold him back. People will look at his scores and make assumptions that are wrong but hard to disprove. In terms of square pegs and round holes, kids like Owen aren’t even pegs. They’re spheres. They roll, often brilliantly, but on their own path and own accord. Try to test for that
art ist bot ist ness
“It’s not so much how he’s used the movies to help with academics,” Suzie says. “It’s how he’s used them to guide emotional growth, which, of course, is the bigger and more complex challenge.
It’s the kind of thing you live for as a reporter—experts earnestly trying to assess a problem and maybe finding a solution among themselves; the presence of a reporter not corrupting the dialogue. And even with their collective century of experience, and long history with Owen, no one in the room could quite figure out what they’d been seeing. But Cornelia and I knew. It’s not about the wisdom of Disney. It’s about family—sometimes wise, often not—and about the power of story in shaping our lives
these are stories human beings have always told themselves to make their way in the world. It’s how people embrace these archetypal tales, and use them to find their way—that’s where the wisdom lies.
Walt Disney told his early animators that the characters and scenes should be so vivid and clear that they can be understood with the sound turned off. Inadvertently, this creates a dream portal for those who struggle with auditory processing, especially, in recent decades, when the films can be rewound and replayed many times
In the autism world, this is often referred to as “over-learning;” yet in the arts, an expression of the old William Blake standard, “to see the world in a grain of sand…and eternity in an hour.
deep learning ness
At the time our therapists are meeting in the living room, in 2010, there are two million autistics in the United States, five hundred thousand of whom are children, with the total expected to reach four million by the end of the coming decade. Beneath the oft-cited incidence rate of one in eighty-eight children, is a more startling one. Due to the four-to-one prevalence in boys over girls: it’s one in every fifty-four boys, a number with few epidemiological precedents. Down syndrome, by comparison, occurs in one of every 691 children. And worldwide, autism incidence rates are surprisingly uniform. Globally, the numbers are in the tens of millions.
Showing how affinity reveals underlying capability may, if properly presented, lead to a reappraisal of possibility. Namely, what is possible in how so many people might be helped to discover productive lives. The alternative is federal support that runs approximately $50 billion a year in 2010, and is sure to rise exponentially.
and ongoing ness.. get up every day ness..
he was staging little plays in his head
These movies, our allies—providing a passage to our son—had an independent power over him. They were engaged with him in an elaborate dance; you had to know their moves, to keep a flying elbow from bloodying your nose. For Owen, the movie Beauty and the Beast was a big, comforting buddy, a relationship built steadily across dozens of viewings and one he relied upon. To suddenly have an impostor burst onto the theatrical stage was like flipping him into a tornado—a profound loss of control. What was being flung about: his precisely crafted relationships with the movie’s animated characters, exactly as they appeared in the movie.
It’s wrong, somehow, that Owen’s struggle has made me better than I deserve to be; kept my eyes clear, as long as they’re focused on how to help him, restore him, though I know now this is the way he was meant to be.
“Don’t you see? Jonathan’s running up our path,” she whispers. “A whole decade of it, from the voices on to the themes, the deeper meanings.”
And I see a reflection in his eyes—of us back in the bedroom of the old house; me, under the bedspread, pushing the puppet up to meet him. That was our big moment. He wants permission to replace it
There’s a look Owen gets when he does one of his deep dives, a downward gaze, like his eyes are folding inward.
I think it’s about finally accepting who you really are. And being okay with that.” The sound of sighs and sniffles comes from the phone. “Oh my. How is it I never saw that.
uncertain about what’s ahead, has focused him
the focus of whimsy. listening to gut. ness.
But Andreas seems to feel it, too—the crazy vertigo of his greatest fan turning out to be an autistic kid, whose greatest joy, and talent, is relentlessly drawing characters Andreas and his gang invented.
It has the feel of a reunion.
virtual connection made face to face.
“I can see and feel with my fingers,
An hour of interactions, especially of this intensity, is like ten hours for a typical person. This is another little recognized feature of autism—how much energy it takes to engage with another human being.
There are times when we felt like Walt Disney kidnapped him; that Owen lived in his world more than ours
We wake up, little by little, throughout our lives.
After several years, when he was told high school kids don’t dress up for Halloween, he wonders why the edict is lifted now that he is of college age
For so many years, it was Owen and his autistic friends, often dressed as Disney characters, who carried later than most the magical realism found in small children,
Once kids get to college, they’ve come to accept that our inner life—a place of restricted access—is where we live and love, and that we all wear masks in public; masks they joyously discard for a grown-up Halloween and replace with some mask of their choosing, also crafted for presentation and effect
His differences are so striking, that when you hit that sameness—that we are all essentially identical in our urges and needs and joys—it’s still a surprise
i know you ness –
Define emergence. From where, toward what? The only thing we were sure of was what we’d learned long ago: it only works for our son if it’s self-directed. He’d have to lead—there was no other way. And we’d have to work off of clues to support him, just as we had been since he was a small boy speaking his invented language. Now, though, the stakes were so much higher. We’re helping him plot a path away from us
he filmmaker’s final insight about how, in terms of happiness, his autistic brother “has much of that stuff all figured out;” and “is guiding me,” Tom Murray concludes, “by just being who he is and living his life the way he does.
“It’s not about the voice actors,” he says, dreamily, like a prisoner savoring freedom. “It’s about getting the voices right, so you don’t even notice—and the characters can live forever
We’ve spent more than a decade wandering in a hall of mirrors—between Owen’s rich imaginary world and his terrestrial life of daunting challenges. Now, those mirrors are shifting as he bends more and more toward interactions and experiences in our world that he finds satisfying.
G. K. Chesterton, the British novelist: “Life is not an illogicality; yet it is a trap for logicians. It looks just a little more mathematical and regular than it is; its exactitude is obvious, but its inexactitude is hidden, its wildness lies in wait.” I’m using the quote as a guidepost for the book I’m writing, almost finished, about the misplaced confidence of Wall Street in its seemingly logical models of the way the world worked; and how Obama, struggling to reset the nation’s course, may have relied too much on his own powerful faith in logic and bloodless reason. It’s the wildness, lying in wait—inexact and startling—that deeply animates our lives and that of the nation. And we carry it, sloshing this way and that, in our stories
As president, though, he told me in an interview in February 2011, that he lost his “narrative thread”—sinking into policy combat with powerful political and economic interests, each wielding their self-interested analysis and irrefutable metrics; he forgot, he said, that “what the president can do that no one else can do is tell a story to the American people about where we are and where we need to go
Those metrics are a language, of sorts, a lexicon of analyses that form the so-called meritocracy, which allocates money and power in society, and judgments about human worth. Meanwhile, stories—interpretive and hard to control—are dangerous and disruptive, creating humility, self-recognition, an opening of the pores. That’s where the deeper answers often lie.
missing it ness
It becomes immediately clear that these students have rarely, if ever, had their passion for Disney treated as something serious and meaningful
the it is me ness
However much our kids’ childhoods were different from that of their typical peers, their adult lives seemed destined to be even more so. I guess I’d figured otherwise and didn’t even realize it. I felt a last parental expectation, hiding there, so inconspicuously, pulled from my chest and smashed in the corner
And for once it might be grand,” she sings, “To have someone understand,” he responds. And together, “I want so much more than they’ve got planned.…
spinach or rock ness
It was “weird,” he said, haltingly, and “also worrisome.” And that the only things that remained the same before and after the terrifying change were the Disney movies. With his auditory processing gone haywire, I asked him if he could understand any of the dialogue in the movies. He said he could over time, because the movies were “exaggerating” everything. Then he reeled off his dozen favorite animated films. Without those movies, “there would never have been me,” he said, and “I would have never talked a lot.
And it becomes obvious why he’s been “working on it,” as he’d often said, for so long. He had to live it, first. His story, like any story, had to arrive at this moment of closure and clarity; a retrospective view, which now—as a young man—he’s beginning to finally assume. Or, in the familiar parlance, you can’t write a coming of age story until you’ve come of age
We would never have wanted Owen to face what he did, of course, but, as for the rest of us, we don’t miss those people, that discontinued version of us. Not anymore. As Walt said in his Tree Talk, Owen shaped us all. Not a blessing in disguise. Nothing disguised about it
With Owen and the other kids in his Disney Club, we’ve learned that each person’s chosen affinity, their passion, no matter what it is, can be a pathway to reach them
Among the most surprising things we stumbled across was how important it was to Owen to accord respect to his affinity—no matter how seemingly narrow or arcane it may be viewed by the wider culture. It affirms his worth. To treat it only as a handle, to grab and pull him into something of our choosing, or twist his interest into an elusive reward, is demeaning
“He needed to breathe life into them so he could talk to himself. It’s the only way he could find out who we was.”
talk to self – in the still – rewire
He sees in the edge of the mirror, poking out of her satchel, that the Goretezzle has no reflection. Just data, ones and zeros, rows of coded numbers. He turns to the sidekicks. “He’s computer generated, made by a machine. That’s why he can change shape so swiftly, so effortlessly. But there’s no heartbeat.
alive\ness can’t be defined/coded
“That’s it, boy.” Merlin says. “That’s what’s real. The only thing that’s real. What you see in each other’s eyes.” “And each other’s hearts,” says Big Mama.
life, animated site:
quartet ness as disney therapy movie/remix..?
diagnoses can be useful tools, capable of delivering hope and relief. But they can also limit our ability to perceive all the complexities and variations within the individual who exists beyond the label. – Andrew Solomon
more about Ron:
talking about confidence man 2013:
the good enough reasons rule – understand the reasons – understand the people better
Ron is the senior fellow at Harvard’s Edmond J. Safra Center for Ethics…
may 2014 cbs:
making sense of the world through your special thing…
Jon asking – what about kids who don’t have the people searching/listening .. like you did – it’s not about curing it – it’s about allowing them to the exit door
Ron – the affinity relieves underlying capabilities
disney therapy – now calling it affinity therapy
trying to understand the world through his chosen affinity..
rather than weaning from the affinity (like has been suggested) – join him in the affinity..
how to connect the world with these lazar beam affinities…
what we all need.. no?
in the city. as the day. we can.
reading this in Matt Taibbi‘s the divide:
a book by Ron Suskind called Confidence Men, published two years into Obama’s presidency, quoted then-treasurey secretary Tim Geithner as saying that exposing the fraud would create financial panics. “The confience in the system is so fragile still,” he reportedly said, “..A disclosure of a fraud.. could result in a run, just like Lehman.”
redefining public ed would eliminate this..
siri as friend:
dec 2014 on cheney/torture (video):
referencing Ron’s book – the one percent doctrine
In November, 2001, Suskind writes, Vice-President Dick Cheney announced that if there was “a one percent chance” that a threat was real “we have to treat it as a certainty in terms of our response.” He added, “It’s not about our analysis, or finding a preponderance of evidence.” This view of a White House dangerously indifferent to facts is familiar from, among other sources, Suskind’s “The Price of Loyalty,” but he adds much here that is disconcerting, particularly regarding the embrace of torture. (It’s hard to shake the image of Bush asking, literally, for Ayman al-Zawahiri’s head, which the C.I.A. briefly thought it had found in a riverbed in Afghanistan.) ..
Copyright © 2006 The New Yorker –This text refers to an out of print or unavailable edition of this title.
may 2015- The Women Sheriffs of Wall Street: Elizabeth Warren, Sheila Bair, Mary Schapiro
31 min – Elizabeth – on hoping it was because of cheating.. but it wasn’t – it was people trying to make it
38 min- or – maybe no boards.. no?
40 min – Elizabeth – on a club quality – that we’re comfortable.. and aren’t going to push the status quo.. won’t be a pain.. the group that is there don’t want disruption… when you bring in people that aren’t a part of the club… it’s disruptive.. if they’re token.. then it’s ok.. but to those who have the power.. beyond that is not ok.
resonating with rhizo15 convo.. on not siloing community/club
53 min – Mary – on how market works
utopia of rules ness…
56 min – Sheila – on regulatory arbitrage
1:02 – we can’t have a country where people work full time and live in poverty
sept 2015 – walt disney doc – w/ron
Ron on Colbert – nov 2016
2004 – on journalism.. being mocked by bush aid.. as being part of reality based community.. we’re an empire when we act we create own reality..histories actors..and all of you will be left to study what we do.. that idea.. something you want to be true.. and reality based community.. that sentence is what i based most of colbert report on for next ten years
on.. being part of reality based..inspiration of a beautiful/true story.. documentary of your fam – stephan
5 min – clip of disney club