Autistic Genius

Being alone was one of the bitterest disappointments of my young life. People made fun of my stilted manner, my pedantic speech, and my detachment from other people.

I walked through the scenes of my life like an outside observer, stepping carefully over the rubble and staying out of trouble. There was very little happiness in my world. Luckily, I had a natural gift for understanding machines and making things work. But people were a complete mystery to me.

– Switched On: A Memoir of Brain Change and Emotional Awakening

Smoking Guitar John E. Robison Designed for KISS. Pinterest.

You may have brought John Elder Robison into your home in the 70s if you watched TV or played with an electronic toy. His was the brilliant mind behind the guitars that breathed fire and launched rockets and drove the KISS fans wild from the stage. The sound equipment he built for Pink Floyd’s sound company played before millions across North America. But he left the world of rock and roll thinking himself a fraud and failure, unable to see his value in the social fabric because he couldn’t read social cues. John didn’t know he was successful because he didn’t feel successful. So he moved into the corporate world, engineering electronic toys and games for Milton Bradley until he climbed the ladder where at the peak he found himself managing engineers, and social skills became more important than technical expertise. Although he remained troubled by people’s response to the differences that were evident in him, John didn’t know he was autistic for 40 years until he picked up Asperger’s Syndrome by Tony Attwood. Nor does he consider himself a genius, but Malcolm Gladwell will disagree because by the time John was 20 years old, he had spent well over 10,000 hours studying music and taking apart electronics, beginning with repair and eventually creating circuits of his own design. John made full use of the laser focus and prodigious capacity for knowledge that was characteristic of Aspergians alongside his commitment to hard work to carve for himself a fulfilling life. His first book, New York Times bestseller Look Me in the Eye, opens the door into the mind of autistic children and those who seem disconnected from the world. I was deeply touched by the testimony that takes us past the struggles of the autistic to the hopes of connection and belonging that embody the human spirit. Our celebrated guest, who has appeared on the Today Show and given countless interviews and talks throughout the country, has graciously taken the time to share some of his discoveries and triumphs with us.

Can you take us through the various points of your journey where you successfully applied your gifts in the face of obstacles?

With a drunk, violent father and a mother who was often manic and sometimes out-and-out crazy, my home life was chaotic and unpleasant. Teachers sometimes saw flashes of exceptionality in me, but that was overshadowed by the many deficiencies kids and adults loved to point out. With no support at school, I dropped out at 15 by which point my parents were in states of collapse, both of them having been committed to the state hospital numerous times.

There were no disability supports for kids back then, at least ones like me. I still managed to have a lot of fun as an emergent adult, playing music, riding my motorcycle, and tinkering with cars and machines. Musicians and car enthusiasts welcomed me because I could do things they valued. Knowing my social limitations, I realized I would never be the guy on stage playing the guitar or the driver racing a rally car to victory. But I could be the guy behind the scenes with the technical skills to help make those things happen. I also became good at fixing cars and between those things, I made enough money to get my own apartment.

I am really lucky to have the ability to fix and create things that others value. Repairing a car or a broken electronic device is a skill that is useful everywhere. Creating stories also has universal value. At first, I wrote reports and proposals for clients. Then I wrote articles in car magazines. After learning about my autism, I decided to write a book and then wrote three more. Now I am back to writing car articles and stories on neurodiversity while running a business that restores, sells, and services high-end cars.

My parents had their share of problems, but despite alcoholism and mental illness they were both successful teachers. I think they would be proud to see that I’ve followed in their footsteps. I enjoy learning and sharing my ideas as the neurodiversity scholar at William and Mary and the neurodiversity advisor for Landmark College. I get to speak on autism and neurodiversity at other colleges every year. As my father did as a professor of philosophy, I grapple with difficult ethical issues in various settings like government autism committees.

Creating pictures, also something I enjoy, too has helped me find success. I earned the down payment on the garage complex of my car company from concert and carnival photo royalties. Today I am proud to see hundreds of musicians and circus performers using my images, which have been widely published, from the pages of the Wall Street Journal to billboards along the highway.

Patch.com

What compelled you to reach for success over against your difficult upbringing and social disability?

Looking back at what I’ve achieved, I guess one thing is how important it was to me that I produce good work. The absence of security in my childhood also gave me a very strong drive to make it. I made myself successful as I learned how to minimize my disabilities to the point of acceptability and how to build up my gifts and find people like those musicians who could appreciate what I could do and whose minds were flexible enough to excuse what I couldn’t do.

I believe knowledge of autism at an earlier age would have changed the course of my life. Without the understanding of what made me different, I grew up thinking I was a second-rate human being. Today, with a large number of extremely successful clients in the auto restoration field, I look at myself and them and see how much social disability had held me back. At the same time, I see how far logic, reasoning power, and technical skill have brought me. These things gave me a strong desire to prove I was good and drove me to my various accomplishments.

You’ve cited studies that measured the internal physiological response of autistic people in the face of emotional prompts like watching someone get poked or hurt. Turns out autistic people sustain a stronger response of empathy than nonautistic folks for longer, at that. Could you talk about autistic people’s capacity to love?

Autistic people have the same capacity for love or any other emotion as anyone else. We just don’t always show our emotions in the expected ways, or to the expected degrees. And our emotional responses may not be the same as those of a person who is not autistic for a given triggering event.

How did you manage discouragement?

I just kept working. I failed at things, lost jobs, made and lost friends, but through it all I just kept going because I had no other choice. The weight of that mantle of sadness was very heavy for a long, long time. It’s much less so today. I have always wrestled with anxiety and depression.

Who inspired you in your journey?

In whatever field I worked there were always older engineers and technicians who seemed to be better at everything I could do. They challenged me to improve my skills. Looking back, I am not so sure they could actually do everything better than me, but being older they certainly possessed more wisdom and experience, and many had families and lives outside work, which I hoped to have one day (and eventually did).

For the longest time I internalized my failure in school and saw myself as just a high school dropout, an uneducated failure. I wish I had models who succeeded outside the mainstream but self-educated people are rare today, although they were quite common before the rise of “big education” in the 20th century.

I may look and act pretty strange at times, but deep down I just want to be loved and understood for who and what I am. I want to be accepted as part of society, not an outcast or outsider. I don’t want to be a genius or a freak or something on display. I wish for empathy and compassion from those around me, and I appreciate sincerity, clarity, and logicality in other people.

– Look Me in the Eye

When Life Doesn’t Cooperate

JK,

I wish I had the words and muscle to help bear your load. You have borne your distresses with such amazing grace. Caring for the elderly becomes much like the labor over young children and you are pressed on all fronts with little margin to tend to your own needs.

Ariel Levy, staff writer at The New Yorker, recounts in her memoir her traumatic miscarriage out in Mongolia at five months. She speaks of grief, loss, growing up, thinking she had been getting somewhere with her career, love, playing house, motherhood, when it all came crashing on her head and she realized she’d just been driving around. She longs for her lost child in the crushed dream of motherhood, and confesses the fear of being without a companion. I thought of you but also of us all.

She quotes a famed writer, a woman late in life who, when asked about her unfulfilled desire for children, answered simply that everybody cannot have everything. Ariel came to see – slowly – that we can have some things. I would add that every gift, every station in life, comes with a dark side we don’t think too much about in eyeing what we don’t have. This side of heaven, as you know, life is a burden, the burden of our humanity. T’s hobble from a judo injury has tapered to a limp. But I am reminded we all limp. And joy can be found in all things.

Life here has been too full. I don’t have hands enough for all that needs doing, putting one fire out after another. Preoccupied as I had been with T, it took 36 hours for me to look down and understand that my thumb was (very) mad at me and was shouting up through my shoulder. I had forgotten the freak wrench off the joint after that first scream. In the resentment at being stretched like taffy, at being kept from the writing in life’s madness and the home school, it hit me last night that I have one shot at this. No matter how hard I try in the future, I will not be able to do this day over with T, resurrect his childhood and do motherhood more patiently and sweetly. I will not be able to care for him as I would want to. In a blink these years evaporated, leaving me with the freedom I gasp for some days and the house quiet. What lessons in character that he has learned from me (by watching) will he take into the world, into his own life and family? Faced, in the past, with the choice of alter egos for a life I could relive, I would’ve – so satisfied with my person – chosen my present self. Now, I would jump at the chance to be anyone else. Someone better at happiness, someone who knows worrying saves no one. In all that selflessness of yours, be selfish with the joy, JK. I don’t envy you your sorrows but no need to look this way through frosted windows.

Love always,
D.

Dear God, yes, I’ll take Combo #4. The family free of injuries (could we throw in my parents?), obedient child, antiaging powers, and that book deal we’ve talked about. But on the days that a smile is a workout, I’ll take it à la carte, the grace just to get through and to know You’ve got this.

Our Final Day and a Deal With God

I wonder if she woke feeling any different that day, if she’d had any telltale dreams. We women have our sixth sense about things. But she probably had no inkling that it was her last dawn, at least on this earth. It was a sudden heart attack. Who did she greet on the way out of her building? Who got the last of her smiling gift? Who gave her her last hug, reminded her that she was loved? Susan Irene Fox is not the first blogger I’d known to have passed – she is, actually, the fourth on WordPress – but her death hits close to home. She reached out to me, put me on her prayer list three years ago, in response to a difficult post I put out. I just revisited our emails, the comments and the guest post Single At Sixty she left on this blog, a brave, humble confession of loneliness and the peace she claimed. She was a kind, giving person, one who had nothing to prove but the truth that had transformed her life.

I think of people hungry for life who dance on the edge of death. Adrenaline junkies, athletes, addicts of all stripes who run to meet Goliath and nearly die so they can live again. I am not so brazen. I have felt a generosity upon my life, knowing the ground can slip from under me any moment. I imagine that Susan, had she known, would’ve wanted more time. More time to do the many little wonderful things we choose to leave undone: forgive, hold, kiss, dance, linger. For me, I feel a greater urgency in the writing as I wonder how many hours remain in my ledger. I could travel more, see more of people and the world to say I’ve lived, but I would be just a consumer in the enterprise. I would rather leave something behind, namely, more poetry, which though I am just a vapor will endure until the sun should die. That is a marvelous thought. My breath on the page, a legible love and memories – a great honor.

Honey, if my brain ever ends up sustained by a machine, if you don’t see the tears and recognition in my eyes, if I can’t make your amaranth and tell Tennyson to do his math, you have lost me already. It’ll be just a ghost of me on that bed and I want you to pull the plug. Don’t extend me beyond my time only to leave me a burden, neither living nor dead, without my words. I pick my lane, the freeway stretching North. But in exchange for the Mexican wife you’ve said you would get, I ask for one final gift: my own little pine box. You are so good with your hands. I know, I know. I put you to work to the end. But you’ll be a free man after that. It should be perfectly within the rights of a man to dignify his wife with a final custom home and tuck her away in the mountains. While you’re at it, bury me with a book. I won’t be needing the Bible anymore. I’ll be in it, getting it 3D! It’s not like I can take this blog. How freaked out will my readers be if I wrote them from the Other Side? But I won’t disturb anyone, buried with my nose in a book. I’ll pick it out and put it in the master where you can grab it easily in the whirlwind preparations.

Dear God,

It’s me again. Remember, I’m the one who sends back her plate when it’s not done right. And though I know the cooking will be just right for Goldilocks there, I’m also the one who’ll be bothering all your best writers and asking that you not room me with a fellow Type A. Don’t forget that I’ll be looking for Eve. What a MESS that girl’s got us all into! So how about we make a deal? Give me just twenty more years so I might hold my grandchildren and make sure their mother doesn’t feed them junk, and I will turn my keys in, no questions asked. You are juggling so much at the moment: our presidency, North Korea, the refugees, not to mention the missionaries who’ve been asking for you. Why don’t you take a break from my small affairs, drop me from your radar for a bit. A thousand years is like a day unto the Lord. Why, I’ll be there in no time. And one last thing. Please tell Susan I said hi and bye, that I miss her – and she doesn’t need to save me that seat.

 

 

 

The Best Things About Blogging

1. Individuality and community.
Blogging gives us the best of both, lets us develop our self in “the collective heartbeat”. (Anne Lamott)

2. The freedom.
Anything goes: some days this is my own TED stage or talk show. On others, my stand-up. Sometimes it’s my notebook.

3. The empowering.
You can take yourself as seriously as you want to and ask others to.

4. The humbling.
You remember you’re just a leaf in the forest. Let’s keep it real.

5. The immediacy, the organic exchange.

6. The traffic.
The comment board is the interface of lives and a place where people can lend their perspective to expand yours.

7. The pay-out.
It’s the immigrant ethos. You sight unchartered space in blogosphere, nothing in your pocket. You stake your ground, work hard, and can build something of worth.

8. The low maintenance.
Comb my hair? Figure out which top to wear?  I can blog in my bathrobe behind my smiling avatar, ever presentable.

Forbes.com

Forbes.com

9. The low cost.
I got the premium plan to keep the ads away, for your sake and mine. I felt vandalized when they started popping up. There is no motive for my writing other than the joy and I’m not here to mark out a trail to a pretty place that empties your wallet. Anyway, at 27 cents a day it beats spending on gas and an overrated drink at Starbucks.

10. The Efficiency.
I’m all set. Honey, no need to write anything for my funeral. Just pull up the comments for the eulogies!

A Million Signatures of Friendship

I caught crickets with the boy you would marry. “I’ll give you a quarter for the Queen,” I offered, and he dispensed the prize insects in glass Coke bottles. My cousins got to keep theirs on the fire escape but aghast at the sight of black crawlies in her home, Mom threw mine down the incinerator chute. I was so mad. The Cricket Catcher breathed restlessly and contrived guns from wooden clothes pins and soda can tabs. Who knew he would find and love my dear friend someday?

You were in a different class in elementary school but somehow I liked you. We still get a kick out of the way that I, Bathroom Monitor at lunch in fourth grade, had the girls wait for their stall in size order because you were short.

Even if I’d journaled the way we clutched bellies aching in laughter, how does one record the telepathy that provoked it? I could’ve noted all the times you found me waiting on the stoop of your building after school but the smell of your home, of worn leather couches that invited me to stay? I showed you how to make Jello and bake out of Betty Crocker. You taught me generosity. Whether from sugar or hormones or real profundity, we cried harder than we laughed. The peals of hilarity, tears and confidences – a million signatures of friendship. You saw the dumbest, boldest, smartest things I did and the words that spilled from my pen; were moved by the poem I published in the eighth grade yearbook but asked in high school what the point was to the vignette. We wore honesty like skin and tread a hundred thousand steps between our homes, passing apartment buildings that boxed in the sky when we looked up. And you told me to make something of myself. The encouragement, acceptance, breakfast and TV dinner rituals: the muscle and fiber of childhood.

If I erased you from those early pages, I’ll end up with more emptiness than story. We didn’t expect to follow our hopes, heartaches, regrets to two lives on opposite coasts full of joys of family and the tiredness that is our inheritance as Korean mothers. I could not have guessed your boy would one day walk the shiny halls of my old high school. He would think, eyes on the girl by the window, that his parents never felt what he has with such density. We are startled by time, little older than when we knew everything at fourteen.

Bonjour, Texas: Summer 1966

By the second week I learned that Texans sweat as much
as the French, and swear even more, that you couldn’t fight one
twin without taking on the other. But the librarian would slip me
the choicest donated fiction, and I played baseball every day in the
vacant lot until sundown called the players home to black and white
body counts and cigarette commercials on the three channels we got.

Sometimes I lay in bed under the half-light of the whirring fan
blades, and dreamt of heroes and ornithopters, zebras and the scent
of chocolate chip cookies in the oven. Other nights I wondered
how words could rest so calmly on one page yet explode off the next,
or why a man would climb a tower in Austin to kill fourteen people.
Wasn’t living a matter of simple subtraction?

One by one the days parted and I walked through the dwindling
heat, eyes squinting, questions in hand, emerging fifty years later
having suffered the mathematics of love and success, honor and
truth, still asking why and how, where it’d gone, shoulders slumped
under the heft of those beautiful, terrible summers stacked high
like so many life-gatherings of unread books awaiting a bonfire.

Robert Okaji, O at the Edges

 

 

Why Are You Looking At Me?

Yana’s hard to miss. She was born with achondroplasia. In her late twenties, she’s four foot six inches tall, and she’s undergone ten operations to lengthen her arm and leg bones.

“Everybody always looks at me,” she mused. “But never for the reasons I want.”

“Everybody I know,” I said, “especially the performers, has such a complicated relationship with being looked at. But seriously, I cannot imagine what yours is like.”

“It’s hard,” said Yana.

I’d spent time with her, but I’d never walked around with her in public, where people stared. I noticed the way people looked at her as she moved through the world. I wondered what it must feel like to have the gaze of the world fixated on you because of the shape of your body. Inescapable…It was the story of her life…the festival of people who stared at her body and then quickly glanced away. Who gawked at her, but never said anything. She’d lived her whole life having to cope with people looking at her the wrong way, but never addressing it…They were looking at her. But they weren’t seeing her. ~ Amanda Palmer in The Art of Asking

Courtesy of Yahoo

Courtesy of Yahoo

To make ends meet while she wrote songs in pursuit of her dream as a rock star, Amanda hired herself as a statue. She painted herself white and stood frozen in a wedding dress in the middle of Harvard Square. (Sounds cool. You know I would do this?)

As they dropped money in my hat, I would lock my eyes onto theirs, and think:
Thank you.
*blink*
Here. Take a flower.
*blink*
And if I was in a particularly good mood:
I love you.
*blink*

What I hadn’t anticipated was the sudden, powerful encounters with people – especially lonely people who looked like they hadn’t connected with anyone in ages. I was amazed by the intimate moments of prolonged eye contact happening on the busy city sidewalk as traffic whizzed by, as sirens blared…

Perhaps even more than being seen, what she really loved about being the Bride was “sharing the gaze.” Feeling connected. which is why stripping, which she’d tried earlier for a season was as disappointing as the money was good. I was being looked at. But I never felt seen. The strip joint was like Teflon to real emotional connection…Sometimes I would get home and have a nice little breakdown, having no idea what to do with all the loneliness I’d collected. People looked at her naked body but no one looked her in the eye.

Isn’t it interesting that a stripper and a dwarf could bear the same heartache? People stared at Yana but didn’t care to connect with her. Apparently, they’d rather do this with a statue. It humanized the Bride to be able to invite “them into [her] face like a host invites a guest into a kitchen” and be invited to look back into theirs. Yana wasn’t invited back. They looked away. Jonathan Novick’s documentary Don’t Look Down on Me, a day in the life of a dwarf in New York City, gives us a similar glimpse into the human heart. The video is a retelling of a hidden camera Jonathan wore as he made his way through what was for him a typically savage emotional minefield as he caught people in their most candid response to his appearance. They not only gawked but snapped shots of him on their phone. One guy actually said, “What is that?” To remain alone, that is, unseen – is to stay incomplete. This is so whether we are married or single because our self-perception, while it should be loud and assured, is not only limited but often distorted. As social creatures we need feedback about ourselves – explicit and implicit – to fill in the spaces and expand us toward our potential. Most of us don’t carry the cross of ostracization and cruelty on a daily basis but it would wear on even those with the strongest sense of self. Because we were made for connection that nurtures. Isn’t this why we crave love and isn’t this where sex, its physical consummation, finds its meaning? That we hope to find embrace and acceptance when we bare ourselves body and soul? When we’re in love, we endow our beloved with generous perceptions of attractiveness. We reinforce his, her dignity. We dignify one another when we look at the other not as eye candy or a specimen but as a human being in process with the same hopes and fears in our own heart.

This longing for relationship is why bloggers value comments so much. A thoughtful word is evidence that we were seen. Every time I publish a post, I am asking for your time. Your eyes. On me. And one reason it is so satisfying when you answer is that bloggers can’t make anyone lean in, let alone return – not to mention how easy it is to unfollow. Amanda’s story is really about the relationship with her fans on social media. Her success as a rock star and the first indie musician to raise $1 million on Kickstarter is, to her, a mere and natural result of real community. While I don’t think of my readers as fans and my name isn’t so big, I can relate to Amanda’s relationship with her blog readers and music supporters. And many of you can, too.

She writes, “I was punch-drunk from the instant gratification of sharing life in real time, the random closeness, the feeling that I wasn’t going through my struggles alone.”

It is astonishing to be seen.

Wishing Well

“Mimi, what do you wish for the most?”

I couldn’t speak. The question distilled my deepest desires down to sudden tears that stung.
Only later did I realize the knee-jerk response hadn’t been to play with The Royal Philharmonic.

I swallowed the truth that would sadden my niece. To deflect her attention, I whispered,
“What do you wish for, Golden Girl?”

She didn’t hesitate.
“For there to be only goodness and kindness in the world.”

What do you wish for the most?