Tagged Autism

My Autistic Son’s Lesson: No One Is Broken

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Credit Giselle Potter

My youngest son, Sawyer, used to spend far more time relating to his imagination than he did to the world around him. He would run back and forth humming, flapping his hands and thumping on his chest. By the time he was in first grade, attempts to draw him out of his pretend world to join his classmates or do some class work led to explosions and timeouts. At 7 he was given a diagnosis of being on the autism spectrum.

That was when my wife, Jen, learned about the practice called joining. The idea behind it, which she discovered in Barry Neil Kaufman’s book “Son-Rise,” is brilliant in its simplicity. We wanted Sawyer to be with us. We did not want him to live in this bubble of his own creation. And so, instead of telling him to stop pretending and join us, we started pretending and joined him. The first time Jen joined him, the first time she ran beside him humming and thumping her chest, he stopped running, stopped thumping, stopped humming and, without a single word from us, turned to her and said, “What are you doing?”

“Learning what it’s like to be you.”

We took turns joining him every day, and a week later we got an email from his special education teacher telling us to keep doing whatever we were doing. He’d gone from five timeouts a day to one in a week.

The classroom was the same, the work was the same – all that was different was that we had found a way to say to him in a language he could understand, “You’re not wrong.” Emboldened by our success, we set about becoming more fluent in this language. For the next couple of years we taught ourselves to join him constantly. This meant that whatever we were doing had to stop whenever we heard him running back and forth and humming. But we could not join him simply to get him to stop running and thumping and humming. We had to join him without any judgment or impatience.

That was the trickiest part. The desire to fix him was great. I had come to believe that there were broken people in need of fixing. Sometimes, I looked like one of those people. I was a 40-year-old unpublished writer working as a waiter. My life reeked of failure. Many days I looked in the mirror and asked, “What is wrong with me?”

The only way to believe that Sawyer wasn’t broken was if no one was broken – not anyone anywhere ever.

I was used to seeing good people and bad people, smart people and stupid people, talented people and untalented people. I had to break that habit. I did this through a trick of perception. If someone was flapping and humming, or insulting you or saying something cruel about a whole group of people, I taught myself to pay attention to the person beneath the behavior, to the one who was scared or confused, who felt unlucky or undeserving or inadequate.

I did this, ostensibly, so that I could be Sawyer’s dad and help him flourish in the world. And by and by he began emerging from his bubble, began talking about wanting friends, began talking about his future. Now, 10 years later, at the end of our classes (we home-school him) every day he asks, “Dad, can we hang out today?” Had this been all that had come of joining Sawyer and learning to see a world without broken people, I suppose it would have been enough.

But 10 years later the writer who couldn’t get published, who felt like failure, now finds himself talking to groups and even crowds of people, telling them, in so many words, “Everything is O.K. even though it looks like everything is not O.K.!” I would never have talked to these people, nor published the essays that inspired these talks, if Jen and I had not joined Sawyer.

Yet the moment I really understood the power of joining came long before any of this. I was having an argument with my wife. I consider ours a good relationship, by which I mean it is the relationship against which I measure all my other relationships. But on this evening we were in the thick of a particularly nasty back and forth. It started small, as they all do. We each felt wronged by the other. The more we talked, the more we tried to “clear things up,” the worse it got. We raised our voices though we live in a small house and our boys would hear us. As the argument grew more heated, as Jen’s voice grew louder and sharper, she shifted before my eyes. I wasn’t seeing my best friend and lover anymore; I was seeing an enemy. Her words, it seemed to me from the opposite end of the couch, were daggers aimed squarely at my worthiness. I had to defend myself.

It was just as I was preparing my next attack that I remembered Sawyer and our practice. I took a beat, and even though Jen still looked like an enemy, even though she still sounded like an enemy, and even though I had learned over the years to protect myself against enemies, I asked myself this question: “What if she’s not your enemy? What if she still loves you? Then what are you looking at?”

This is often how I’d practice with Sawyer or myself or strangers on the street. If any of us looked broken, I’d ask, “But what if no one is broken? Then what are you seeing?” So that’s what I did with Jen. And as I asked this question, she changed again. Now I saw a woman who was as upset as I was, who wanted to be in agreement as badly as I did, who didn’t understand why we couldn’t reach an agreement. In that instant my war was over. Soon, the argument was over as well. As always, it had just been a misunderstanding. We still loved each other after all.

Joining Sawyer taught me that unconditional love is not some point on the map. It is a path that leads me where I want to go – to the world I want to live in, rather than the one I’m seeing.

William Kenower is a writer and the editor of Author magazine.

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An Experimental Autism Treatment Cost Me My Marriage

Photo

Credit Giselle Potter

What happens to your relationships when your emotional perception changes overnight? Because I’m autistic, I have always been oblivious to unspoken cues from other people. My wife, my son and my friends liked my unflappable demeanor and my predictable behavior. They told me I was great the way I was, but I never really agreed.

For 50 years I made the best of how I was, because there was nothing else I could do. Then I was offered a chance to participate in a study at Beth Israel Deaconess Medical Center, a teaching hospital of Harvard Medical School. Investigators at the Berenson-Allen Center there were studying transcranial magnetic stimulation, or T.M.S., a noninvasive procedure that applies magnetic pulses to stimulate the brain. It offers promise for many brain disorders. Several T.M.S. devices have been approved by the Food and Drug Administration for the treatment of severe depression, and others are under study for different conditions. (It’s still in the experimental phase for autism.) The doctors wondered if changing activity in a particular part of the autistic brain could change the way we sense emotions. That sounded exciting. I hoped it would help me read people a little better.

They say, be careful what you wish for. The intervention succeeded beyond my wildest dreams — and it turned my life upside down. After one of my first T.M.S. sessions, in 2008, I thought nothing had happened. But when I got home and closed my eyes, I felt as if I were on a ship at sea. And there were dreams — so real they felt like hallucinations. It sounds like a fairy tale, but the next morning when I went to work, everything was different. Emotions came at me from all directions, so fast that I didn’t have a moment to process them.

Before the T.M.S., I had fantasized that the emotional cues I was missing in my autism would bring me closer to people. The reality was very different. The signals I now picked up about what my fellow humans were feeling overwhelmed me. They seemed scared, alarmed, worried and even greedy. The beauty I envisioned was nowhere to be found.

Seeing emotion didn’t make my life happy. It scared me, as the fear I felt in others took hold in me, too. As exciting as my new sensory ability was, it cost me customers at work, when I felt them looking at me with contempt. It spoiled friendships when I saw teasing in a different and nastier light. It even ruined memories when I realized that people I remembered as funny were really making fun of me.

And the hardest thing: It cost me a marriage. When I met my former wife (a decade before the T.M.S.), she was seriously depressed. She’d accepted my autistic even keel, and I accepted her often quiet sadness. I never really felt her depression, so we complemented each other. She could read other people much better than I could, and I relied on her for that.

Then came the T.M.S. With my newfound ability I imagined myself joyfully shedding a cloak of disability. I thought she would be happy, but instead she said matter of factly, “You won’t need me anymore.” My heart hurt, and I felt unspeakably sad. Later, people at work told me they’d liked me better the way I was before.

I’d lived with my wife’s chronic depression all those years because I did not share it. After the T.M.S., I felt the full force of her sadness, and the weight of it dragged me under. At the same time, I felt this push to use my new superpower, to go out in the world and engage with other people, now that I could read their emotions. When I think about the way my behavior must have appeared to the strangers I encountered, I cringe.

Normally people change in a marriage, over time. What happens when one person changes overnight? We were divorced a year after the T.M.S. experiments began. After the divorce, I embarked on a disastrous relationship with someone who could not have been more different, and I was devastated when that, too, fell apart. I learned the hard way that emotional insight allowed me to see some things, but another person’s true intent and commitment remained inscrutable.

After some initial tumult, the changes in me proved transformational at work. My ability to engage casual friends and strangers was enhanced. But with family and close friends, the results were more mixed. I found myself unsettled by absorbing the emotions of people I was close to, something that had never happened before. Strong emotional reactions welled up in me, and I showed feelings I had never expressed.

It took me five years to find a new balance and stability. In that time, my sense that I could see into people’s souls faded. Yet the experience left me forever changed. Before the T.M.S., discussions of emotions were like cruel taunts to me; it was as if someone were describing beautiful color to a person who saw in black and white. Then, in an instant, the scientists turned on color vision. Even though that vision faded, the memory of its full brilliance will remain with me always.

I’m married again, to someone who’s emotionally insightful. To my amazement, she became best friends with my first wife, and helped me reconnect with my son. She started a tradition of family dinners and gatherings, and brought new warmth into my life. Even more, she helped me become part of a web of emotional connectedness I’d never known before, and surely could not have known pre-T.M.S.

That really shines through in my relationship with my son. We had grown apart before the T.M.S. through a combination of his teenage rebellion and our mutual inability to read each other’s feelings. (My son is on the autism spectrum, too.) We joined the T.M.S. study together, and it became a powerful shared experience. Even as the T.M.S. effects pushed my ex-wife and me apart, they drew my son and me together. The T.M.S. also helped me understand my mother, in the last years of her life.

I’ve made new friends, and built a stronger business. And there’s something else: I’ve learned that the grass is not always greener when it comes to emotional vision. For much of my life, I’d imagined I was handicapped by emotional blindness. When that changed, seeing into other people was overwhelming. Becoming “typical” proved to be the thing that was truly crippling for me. Now I realize that my differences make me who I am — success and failure alike. I’d call that hard-won wisdom.


John Elder Robison is a consultant on autism and the author, most recently, of “Switched On: A Memoir of Brain Change and Emotional Awakening.”

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